By Lois Gerber, BSN, MPH, RN
The nurse practitioner at the health department handed me a new referral. “Evan’s a healthy 6-year-old with Down Syndrome,” she said. “No cardiac problems. He’s short with a body mass index at the 90th percentile. Can you make a home visit?”
Two days later I was sitting in the family’s apartment talking with Leslie, Evan’s mother, a stocky middle-aged woman wearing khaki slacks and a white T-shirt.
Dressed in a navy sweatsuit, Evan sat in the corner of the room in an oversized children’s rocking chair watching Sesame Street on television. A box of Cheez-Its sat on the table beside him. Piles of men’s and women’s clothes were stacked on top of a sewing machine by the back wall. “I alter people’s clothes,” Leslie said. “I have to work. We need the extra money.”
I smiled at her. “Let’s talk a bit.”
“There’s nothing a nurse can help with,” she said. “Evan’s doing OK. So what if he has a little baby fat?”
“He’s really not a baby anymore,” I said.
Leslie swallowed hard. “You don’t know what it’s like. I’m here every afternoon with him. Mornings, too, when he doesn’t go to school.” She sighed. “Evan sits watching television while I sew. He loves to rock and eat. I know it’s bad for him but … .” Tears filled her eyes.
I learned Leslie and her husband, Sam, felt overwhelmed with caring for their son even though they’d adjusted to the fact that he would always have developmental challenges. Sam worked long hours as a security guard and was emotionally detached from the family.
Although toilet trained, Evan had poor muscle tone and a lumbering gait and was prone to upper respiratory infections. His tongue protruded slightly. Developmentally, he functioned as a 3-year-old.
On another home visit, I said, “Obese children tend to have weight problems all their lives.” Leslie smoothed her T-shirt over her stomach. “What else can I do?”
“Let’s write down some ideas,” I said. “You first — something you think could help.”
“Not giving him Snickers bars after supper.”
“Good idea,” I said.
Together, we developed the care plan. She agreed to complete a three-day food diary, including snacks, which showed the family’s regular meals contained too much bread and dairy and not enough fruits and vegetables.
I tailored my teaching to the family’s food preferences and eating style. The goals were for Evan to maintain his present weight until it fell within the normal range for his age and to eat foods daily from each of the major food groups.
Leslie agreed to a referral for food stamps, allowing her to purchase more fresh fruits and vegetables. I taught her healthier food choices using pamphlets with heart-healthy recipes. She prepared more low-calorie, low-fat meals with fruits, vegetables and whole grains.
To encourage Evan’s physical activity, Leslie enrolled him in an afternoon playgroup for developmentally delayed children. On Saturdays, the family shopped for groceries together. The parents compared food labels and let Evan participate in the final selections. Leslie declined referrals to a nutritionist and the National Association for Down Syndrome, but agreed to save the phone numbers for future reference.
On my last visit, a smiling Evan met me at the door. Leslie had limited his television watching to two hours a day and replaced his candy and cookie snacks with granola bars or small dishes of dry cereal and raisins. Instead of buying milkshakes at fast food restaurants, she prepared them at home with skim milk and fruit juice.
“Sam and I are losing weight,” Leslie said proudly. “We have more energy and feel more like a family now.”
Nurses must be creative and look beyond the obvious to find long-term solutions to complex health problems. Referrals to community resources broaden the family’s base of support and increase the likelihood that care plan goals will be met and maintained. •
Lois Gerber, BSN, MPH, RN, is a retired community health nurse and currently a guardian ad litem for the state of Florida’s foster children. The names of the patient and family members were changed for this article.
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