University of Missouri - Columbia.
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Posted 02.23.07


Single Moms Lack Support in Caring for Kids With Cystic Fibrosis, MU Study Finds

COLUMBIA, MO - A young woman in a green dress smiles at the camera as her mom poses behind her. This is one of several pictures posted on a cabinet in the office of Debra Gayer, assistant professor of clinical nursing at the University of Missouri-Columbia. The young woman in the picture was a patient of Gayer's who was diagnosed with cystic fibrosis. She is one of only a few of Gayer's patients who are still living. It was Gayer's personal experience that led her to study the disease and how mothers cope with the awesome responsibility of caregiving.

In the past 40 years, cystic fibrosis (CF) patients have started living longer, and today they are expected to live until their mid-thirties. The responsibility for their care often falls on the shoulders of their mothers. Gayer studied three different types of family structures: first-marriage families, single-parent families and stepfamily households who all had children with CF.

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"Cystic fibrosis affects everyone in the family, but is more taxing on mothers because a majority of the treatment responsibility falls on them," Gayer said.

CF is transmitted through a recessive gene from both parents that causes abnormal mucous secretions in many parts of the body. Treatments consist of chest taps (to break up the mucous), enzyme replacement medicine and breathing treatments (commonly given through a mask). Administering the treatments can take up to two hours a day.

Single mother-headed households often take on the task of caregiving for the CF child on their own, Gayer said. Evidence also shows that mothers do not receive assistance in administering CF treatments from nonresidential fathers, even if the father is in regular contact with the child.

"Single mothers may not carry out treatments fully because of the overload of their schedule. They are juggling many tasks and responsibilities in addition to caring for a CF child," Gayer said.

Gayer also hopes that nurses will be more attentive to the struggles of single mothers and offer their assistance more readily. She found that often nurses are not viewed as a resource, and that single mothers are reluctant to ask for help.

"Nurses should be more aware of how they present themselves to the mothers and seek those single mothers out more," Gayer said.

The study, Family Structure and Mothers' Caregiving of Children with Cystic Fibrosis, was published in the Journal of Family Nursing. It was co-authored by Lawrence Ganong, professor in the MU Sinclair School of Nursing and co-chair of the College of Human Environmental Sciences Department of Human Development and Family Studies.



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