1. Provide the title of your story or series and the names of the journalists involved.
Home Is Where the Lungs Are By Sharlene George
2. List date(s) this work was published or aired.
Aug-10
3. Provide a brief synopsis of the story or stories, including any significant findings.
Respiratory care professionals are well-versed in ventilator care in the acute setting, but few are fully aware of the serious challenges that families of children who need long-term mechanical ventilation face once they transition to home care. This article describes the clinical, emotional, and logistical difficulties of home care and gives dramatic personal examples of life-threatening situations that families have encountered. More families than ever before must confront these issues as technological advances allow more medically complex infants to survive. It offers possible solutions that include thorough patient education and professional training. It also describes a legislative initiative that would empower respiratory therapists to contribute their unique combination of knowledge, technical skills, and compassion to fill significant gaps in skilled staffing in the home care setting.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Reviewed HR 1077 and S 343 (The Medicare Respiratory Therapy Initiative Act) via http://www.govtrack.us/congress/bill.xpd?bill=h111-1077. This established an important link to legislative efforts that could affect how respiratory therapists could improve home care for patients dependent on ventilators. No special requests were required.
5. Explain types of human sources used.
I interviewed a range of expert sources, including John J. Downes, MD, an internationally known expert on pediatric ventilation in the home care setting. He presented the "big picture" on the challenges this patient population encounters. His assistant, Deborah Boroughs, MSN, RN, gave valuable insight into the day-to-day help the Ventilator Assisted Children's Home Program provides families. She put me in touch with the Shellenberger family, who told me about their dramatic real-life experiences within the home care system from a patient perspective. Kathy Barnum, RRT, showed how respiratory professionals train families such as the Shellenbergers to become experts in their children_s care. Howard Panitch, MD, provided concrete examples of possible solutions to the shortage of skilled professionals in the home care setting. I also spoke with two representatives from the International Ventilator Users Network who were not quoted but provided background information.
6. Results (if any).
I received positive and touching comments from my sources and readers. Here are some excerpts:
"You made many good points in a very clear way! We will tell the readers of IVUN and those who come to our site about it. Call on us at any time. You have the opportunity to impact the professionals and what they do impacts your ventilator users." Joan L. Headley, executive director, Post-Polio Health International, including International Ventilator Users Network
"A very nice article – you did an excellent job pulling all the aspects together." Judith Fischer, information specialist, International Ventilator Users Network "Excellent article." John J. Downes, MD
"I have a 10-month-old son who is ventilator dependent and has a trach & In reading this article, I feel some hope. We are being trained at the PICU and hope to be comfortable with the home nurses when we head home. This article has made me more aware of the lack of training, and I will be very vigilant in making sure our nurses are competent," Sheri, a reader.
"Not only am I a nurse, but I am also a mother of a child who is trached and vented for three years. She had her trach removed last month. It is a challenge not only for the parents to come home with a technology dependent child, but it is also a challenge for the nursing staff coming into the home to not only be there for reassurance for the family, but to also know when to take a step back and let the family be in charge. I have been on the receiving and the delivery ends and this is a continuous challenge to both parties. Thank you for allowing one of our amazing trach-vent families to be profiled and to be inspiring to intimidated families AND nursing staff out there!" Tara Romano, RN
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No
8. Advice to other journalists planning a similar story or project.
My advice is for journalists to get up from their desks. In trade journalism, it is not often that we have the opportunity to leave the security of our phones and do in-person interviews. I decided it was imperative to meet the Shellenberger family face-to-face, which allowed them to feel more comfortable and tell me their thoughts, fears, and triumphs. I used their experiences as a central thread to demonstrate the article's major points. After listening to the Shellenbergers describe how they saved their daughter's life, I knew this article could make a difference in the ways medical professionals and families approach home care for technology dependent children.