20 USA, Yuuko Johnson

Hello, my name is Yuuko Johnson and I am a retired public health nurse who was working in the infant development program at the Sacramento County Office of Education. I reside in Sacramento, California which is within the USA. For my position, I was in a transdisciplinary team working with speech therapists, occupational therapists, pediatricians, physiotherapists, early childhood educators, and many more healthcare professionals to serve children under 3 years old with life limiting disabilities. The goal of the program I participated in was to teach families how to cope, manage, accommodate, and live with a toddler diagnosed with a life limiting illness/disorder. As the RN of the team, my role was to understand the client’s diagnosis, situation, and family goals while thinking of an overall plan of care so that the client could perform or have help to perform activities of daily living in the easiest methods for themselves or their family. The range of goals depended on the severity of the diagnosis. Some families could want to be able to have their child in their car and others may look towards having their diagnosed child learn to have a near independent lifestyle in the future. Along with developing a care plan, I provided education for parents and family so that they have full health literacy regarding their child’s health. I believe that giving education to the family puts them in a position of advocacy for the health of their son or daughter. The infant development team took part in home visits as it was best to be in the environment where the care would be provided in the future. When Covid-19 hit, the program was affected in a large way as it was impossible to perform home visits to the extent that they were done before. The program switched to a virtual setting instead of the home visits. Not every family had the ability to connect through technology as they depended on in-person visits, so it was extremely hard to accommodate for the families in need. Through my experience, I was able to see firsthand how virtual meetings as not nearly as affective as home visits because I was not able to walk around the home to see safety liabilities and I was not able to see the full picture of the client situation as I couldn’t physically do an assessment. In result of my experience of working through the pandemic, I was able to appreciate what I was able to do when I got the chance to visit homes before. Healthcare professionals cannot only assess a situation visually, they need all of their other senses such as hearing, touching and even the ability to smell the environment in order to be able to fully understand what is going on. A big lesson I learned over the past few years was the extent of how important collaboration with family and other providers is as it was harder to communicate through the Covid-19 times. In result of the Covid pandemic, I am thankful that we are in a time where home visits are possible again as healthcare outcomes for toddlers with life limiting diagnoses may have been deeply affected during the pandemic.