7-year-old Kailisa loves to tap dance and hopes to be a cheerleader some day. But before any strenuous physical activity, she must inhale two puffs of Albuterol—an asthma medication that keeps her lungs open. Not only does her Asthma Action Plan guide her life, but also the lives of her family. Kailisa has three other siblings who were also diagnosed with asthma. Her doting mother, Nilda shares that Kailisa's asthma is the worst of all her children's– Kailisa has had a total of five critical care hospitalizations, with the longest stay lasting nine days.
"She has severe asthma and has the worst out of all my kids. Her asthma doesn't have a season. Her asthma comes fast, there's no warning. She starts coughing, and coughing and coughing—that's how you know her asthma is coming back," says Nilda.
For the past three years, Kailisa has been receiving care at Codman Square Health Center located in the heart of Dorchester. Kailisa and Nilda both trust and depend on her nurse, Jhenane (J.J.) for management care and education.
"Both her doctor and Nurse J.J. helped teach me how to manage her asthma…I like how everybody's involved with each other," Nilda shared.
The goal of the Prevention & Wellness Trust Fund (PWTF) grant is to decrease asthma-related hospitalizations and urgent care visits by partnering with 7 community health centers, 6 Head Start (early childhood education) sites and 29 Boston Public Schools in Dorchester and Roxbury. Over 2,000 children are involved in the grant. The grant helps J.J. communicate with Kalisa's school nurse at ABCD Academy and develop the Asthma Action Plan with Kailisa's pulmonologist at Boston Children's Hospital and her primary care provider.
"I get lots of ER follow-ups from her hospital as well as from her pulmonologist at Boston Children's Hospital. They fax her asthma action plan to me and then we update it in our system [at Codman]. I give two copies—one to the parent and the other to the school," says Nurse J.J.
When asthma is expertly managed in all settings of a child's life, gaps in care are reduced and quality of life is enhanced. The Roxbury and North Dorchester neighborhoods have the highest pediatric asthma rates in all of Massachusetts. PWTF is addressing this health inequity by improving the integration of healthcare/hospital services with community health interventions, an executive priority of the Boston Public Health Commission.
What is unique about PWTF's approach to pediatric asthma management is that it highlights the closest clinical experts of a child's life – nurses. Because of competent and compassionate nurses like J.J., Nilda and Kailisa can be more in control of their lives. J.J. is the reason Kailisa knows how to use her inhaler independently and is always a phone call away to guide Nilda with her children's asthma care at home. Sadly, students with asthma have higher absentee rates than their non-asthmatic classmates. By keeping Kailisa healthy, she is able to attend school regularly and Nilda can continue working, giving the entire family fuller lives by lessening the burden from asthma.
Because of the connections to resources through PWTF like Breathe Easy at Home, the interior walls of the apartment where Kailisa lives will be cleaned of mold. Nilda encourages other parents of asthmatic children to be compliant with the cleaning and medication regime, even if they are feeling fine. Kailisa advises children living with asthma to "always keep your inhaler in your backpack." Because of the work of PWTF, instead of being in the hospital, Kailisa can play outside and learn in school– where every 7 year old belongs.