Parent Information
Posted on March 22nd, 2007
Physicians and the Communication of “Bad News”: Parent Experiences of Being Informed of Their Child’s Cleft Lip and/or Palate
Date: July, 1995
[Abstract (Condensed)]1
Physicians often are called on to deliver “bad news”. To develop recommendations for physicians, this study was undertaken to document how parents of children born with a [cleft lip] perceive the encounter with a physician during which they are informed of their children’s diagnosis. The study also examines parental preferences for how this communication might best be managed and compares those with parent reports of their actual experiences.
Results: Parents learned the diagnosis at birth (90%) from a physician (96%). Many report positive experiences, but there are significiant differences between what parents experienced and what they desire in the informative interview. Parents wanted more opportunity to talk and to show their feelings and wanted the physician to try harder to make them feel better. Parents indicated a desire to have more information and more of a discussion about the possibility of mental retardation. They wanted… more referral to other parents than they had experienced.
The study suggests specific communicative and educational approaches that are likely to improve parental satisfaction with… physician communications.
[Extracts]
“…parents are immediately concerned about (in order of rank): home care of the child, social embarrassment, the age of surgical intervention, future mental ability, and the duration of treatment.” (from 1974 Israeli study).
“…more knowledge about a condition did not improve communicative skills, but that training in interviewing and experience did.” (from 1982 study).
“…strongest preferences were for physicians to show caring and to allow parents to talk and for parents to be allowed to show their own feelings. They wanted the physician to share information and to be highly confident. Most parents desired parent-to-parent referral.” (from 1992 study).
“The comments and responses from parents indicated that the memories of being told are often very vivid and important even years later.”
“Parents most value the physician’s confidence, ability to provide information, ability to show caring, and willingness to try to make parents feel better.”
“The findings from this study may help inform educators about what behaviours and communicative approaches should be taught to physicians who will convey a diagnosis of cleft lip and/or palate.”
“The moment of being told a child’s diagnosis is critical; it is the time at which the “ideal” wanted child ceases to exist and the new “special”, and often unexpected, child becomes real. At his moment the family’s life is changed on a permanent basis.”
“The conveyer of a serious diagnosis must be skilled at inspiring trust and able to communicate effectively with parents.”
- R.P., Sharp, M.C., Claire Lorch, S., Kachalia, B. (1995). Physicians and the Communication of “Bad News”: Parent Experiences of Being Informed of Their Child’s Cleft Lip and/or Palate. Pediatrics, July, 1995, 96(1):82-89 [↩]
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