'The Doctor Had No Time To Explain'

Parents of Kids With Chronic Illness Chronicle Hurtful Behaviors

When the parents of children diagnosed with chronic illnesses were asked about non-supportive and hurtful behaviors from relatives, friends and health-care providers, they said more than a third of such incidents came from those they most expected to help -- doctors and other health professionals.

Joan M. Patterson, PhD, and colleagues at the University of Minnesota and University of Washington surveyed the parents of 182 children aged 12 to 30 months who had been diagnosed with a variety of chronic conditions. They collected information on 454 instances of negative behaviors -- 174 attributed to extended family members, 158 to health care providers and 122 to others.

Among health care providers cited, almost two-thirds (62 percent) were physicians. "What is particularly important in these data," the researchers write, "is the frequency and intensity of parents' reports of loss of support and hurtful behaviors from extended family members and from health care professionals." Examples quoted in the December issue of the Journal of Developmental and Behavioral Pediatrics include:
_ "...the geneticist was a nasty woman -- very insensitive in explaining the diagnosis. She was arrogant and flaunted her education. She seemed oblivious to the pain of the situation."
_ "...I was told "you wouldn't understand" and "the doctor had no time to explain." They were unkind about giving information."
_ "...the doctor...fell apart when he saw the baby. He was mean, rude, and not helpful, saying "I'm not treating her." He hadn't had any experience with a Down syndrome child."

Noting that it is well documented that social support is a "major factor protecting individuals and families from the negative impact of stressful life circumstances," the researchers said that when such support is withheld by relatives, the pain "doesn't go away easily, if ever.... Relatives are relatives forever."

They hypothesize that repeated reminders of relatives' nonsupport could become an additional hardship that can mean "more than the loss of a protective factor and might actually become a risk factor because of the ongoing strain and tension it creates that never can be resolved."

As for physicians, the researchers report, many are "uncomfortable facing what they cannot cure," and this leads them to communicate in ways that parents perceive as "brusque, insensitive, condescending, and fail(ing) to disclose all needed information."

What is important, they write, is that how news of a chronic illness diagnosis is delivered "can influence the family's adjustment. Families benefit from providers who sensitively and accurately inform them about the child's condition."

The surveyed parents were mostly from two-parent, middle-class Caucasian households in Minneapolis-St. Paul and Seattle, the mothers averaging 31 years old and the fathers 34. The researchers pointed out that non-white and low-income families who are socially marginalized might experience even more nonsupport, "particularly from health care providers who are more likely to be demographically different."

The research was supported by grants from the National Institute on Disability and Rehabilitation and from the Maternal and Child Health Bureau. The Journal is published bimonthly by the Society for Developmental and Behavioral Pediatrics. For information about the Journal, contact: Paul Dworkin, MD at 860-714-5020.

Posted by the Center for the Advancement of Health
(link: www.cfah.org),
Contact: Richard Hebert (rhebert@cfah.org)