Childhood Arthritis and Rheumatic Disease Education (CARE)

October 21, 2009

This morning's presentation on implementing a CARE (Childhood Arthritis and Rheumatic Disease Education) Program was comprised of a step-by-step case study. Barbara A. Paliughi, RN, BSN, and Linda L. Miranda, RN, BSN, relayed their experience of getting this type of program off the ground at their place of employment, the Children's Hospital of Central California.

This morning's presentation on implementing a CARE (Childhood Arthritis and Rheumatic Disease Education) Program was comprised of a step-by-step case study. Barbara A. Paliughi, RN, BSN, and Linda L. Miranda, RN, BSN, relayed their experience of getting this type of program off the ground at their place of employment, the Children's Hospital of Central California.

The two main areas of focus for this presentation were coordinating a team and getting funding. When Paliughi and Miranda initially began their program in 2001, they received good feedback but were unable to get the attendance they desired. So they made a couple adjustments. First, they decided that, going forward, they would have their annual CARE event outside of the hospital. Although the Children's Hospital of Central California is a beautiful and inviting facility, they figured that being outside would be more conducive to the children being able to interact, take part in fun activities, and learn from the educational activities. Paliughi and Miranda also mentioned that it is important to gather a dedicated and passionate team of people who will be able to work together to make the annual event a success. Over the years, as the event has progressed and evolved, their team has included nurses, social workers, parent advocates, physical therapists, dieticians, parents, volunteers, etc. They told the audience that, often times, members of the team really enjoy being a part of the event and usually return annually.

During the day of the event, children get to take part in a variety of age-based activities. There's face painting, lots of arts and crafts, physical activities, singers and entertainers, and more. Each year has a different theme; one year the theme was "Pirates" and all the children and counselors dressed up accordingly. Some of the older campers really learn a lot at the camp and learn to become advocates for themselves and others who share their conditions. In fact, one camper actually got to take her story to Capitol Hill and used her 15 minutes of fame to bring awareness to Lupus and to tell Lupus patients that they are capable of doing great things.

Before any of these events are possible, leaders must think about the funding. Paliughi and Miranda basically stressed the importance of grants. They told the audience that, although the economy has been less than ideal in the last couple of years, there are still programs and grants available to those who do their due diligence. It's just a matter of finding the right ones, filling out the appropriate paperwork, and following up regularly.

Although it was an arduous process, creating a CARE program is extremely fulfilling and the rewards heavily outweigh the time and effort it takes. How do I know this? Because Paliughi and Miranda peppered their presentation with photos from the events. The campers, ranging from young children to teenagers, were all smiles in every photo. If only for a day, they were able to get outside and have fun with others who know what it's like to be them. That kind of gratification is priceless.