Connie Siskowski, RN, PhD - phaware® interview 296

Connie Siskowski, RN, PhD from American Association of Caregiving Youth discusses youth caregivers who sacrifice their education, health, well-being and childhood to provide care for ill or disabled family members.

My name is Dr. Connie Siskowski. I am the president and founder of the American Association of Caregiving Youth.

I was one of those kids who cared for my grandfather between the ages of about 11 and 13 and never realized how much it impacted my life as an adult. My background is in health care through a broad spectrum; everything from teaching paramedics to hospice care. It was back in 1998, when I attended the first International Conference on Family Caregiving in London that I learned about the topic of quote unquote “young carers” and how much they aren't being recognized and supported. So all my life, different seeds were planted and ultimately I remarried and my husband encouraged me to go back to school to get my doctorate.

I did so to have a voice for all family caregivers, never expecting to discover the extent of this population in our country, much less in our County. The national study which estimated that there are at least 1.3 million children, ages eight to 18 and this role was released in 2005. Our data here in Palm Beach County started in middle school, so the children that we work with are from ages about 11 on to their high school graduation. So that could be 18 or it could be a little older, depending on when they started in school. Every family is different. Every child's circumstance is different. Sometimes the roles are assigned. Other times, the kids step up to the plate.

For example, one of our families, the parents and son moved in with the grandma who had dementia. Dad worked and mom was home. And the student’s bedroom was right next to his grandmother. So he and his grandmother developed a close relationship and he was always there for her when his mom was not available. Ultimately, his grandmother relied on him more than anyone else.

We work in partnership with the school through our Caregiving Youth project to identify the kids and then work with them in school, as well as to do a home visit and provide opportunities for the kids to have fun. Because essentially, when you're in school, it's like if you're an adult and you're at work and you're worried about your loved one at home. It's hard to focus and the stress builds no matter what the health condition is.

As a result of our home visit, have we found that respite would really be helpful so that both our student and his mom could have a break. They chose to have respite on Saturday morning, so that they could as a family, go and have breakfast together and have just a little time away to work on developing their own relationship and having some of their own needs met.

Some of our kids take care of a grandparent, others may take care of a parent and it may be a parent who has cancer. It could be a parent with ALS or MS or even brutal diabetes. Or it could be a sibling. As we know that there are more and more kids who are on the autism spectrum. The siblings often participate in their care as well.

We identify the kids beginning in sixth grade through an eligibility process and so about 70% of our kids come that way. Parents have the opportunity to opt out. Otherwise, the kids would participate in a screening. Then we do an analysis of that data to focus our limited resources on the kids in the top three of five levels of responsibility. That's determined by how much time they spend each week and the type of tasks that they do.

So for a child who is providing personal care as opposed to somebody who's doing grocery shopping, the personal care gets a higher weight in the analysis. Then we meet with the kid to let them know about the program and invite them to join if they would like to. Then they get parental consent. Others are referred to us by school staff, because the kids may be coming in late. Recently, there was the child who was coming in late several mornings a week and we found out it was because she was a high school student who is driving her mom to dialysis prior to coming to school.

The issues of caregiving youth are or nothing that's taught to nurses, to school staff to guidance counselors, even to community leaders. If a child comes in late, people may easily think, oh, they don't care. Or they just want extra attention. Or they may be acting out at school, because it's the only place that they can go release some of their frustration and anger.

The four ways that we enroll students in our program is through the eligibility process, through school referrals, through other agency referral or through a student self-referring. One of the things that we do at school, is the lunch and learn where we focus on a specific diagnosis each month and bring in resources related to that. It's open to all students as well as school staff. Sometimes the kids may be hearing, like a while ago, a boy who had just been with his mom the night before who had had open heart surgery, heard our family specialist talking to somebody about diabetes and he's thinking "Oh my mom has diabetes." So he went up to the table and had lunch and learn and then ultimately came into our program.

In addition, in schools, we do a skills building session in group of between six and ten kids at a time. We've developed a curriculum that we use so that it's consistent to school. We [also do] the lunch and learns. During that time of the home visit, we often find out that the kids don't have a computer at home or a laptop. Kids who are homeless or who are in foster care receive special supports, because they're recognized by the state, by the government, but not yet care giving youth. So, if they go to a Title 1 school, where there's many students who are on free and reduced lunch, there's the benefit of tutoring.

Our kids often have to go right home. They can't stay after school. So tutoring is something that we also provide, because we want them to succeed academically, as well as personally. Then we do some fun activities, because often our kids don't have time to do be a kid and to have fun. So we might do a picnic or go to the beach. We have an overnight camp. We do some activities with families like a family holiday celebration. We also have been creative to do something like an overnight pajama party at a local bowling alley. The range is wide, but whatever it takes it for the kids to have fun.

If you compare a caregiving youth against a non-care giving youth their levels of anxiety and depression are higher. However, with support we can turn that around. The kids often just step up to the plate or sometimes there's just nobody else. For example, we have more and more grandparents raising grandchildren and they were recognized way back in 2001. President Clinton signed the National Family Caregiver Support program. That included grandparents raising grandchildren, but there wasn't any forethought to what happens if the grandparent gets sick and particularly, if it's a single grandparent and then the role reverses. The same with a single parent households where sometimes there's nobody else. There may not be a sibling. With the mobility of our society, people are moving around and around so that they have a difficulty in their roles and have so many more responsibilities. Often there are younger siblings and they may help with homework, they may be doing the cooking to make sure that their siblings are fed as well as, becoming a parent. That's why these kids really, really need support.

They're precious.

One of the things is that in doing caregiving, this reciprocity. So it's not all bad. The kids that we work with are such good kids and they really learn compassion and empathy. Right now there's a national effort to teach children empathy and our kids could be the teachers. There was a study done of young adults who had dropped out of school and 22% said it was to care for family members. So in terms of the individual as well as society, it's really important to support this population so that they do graduate from high school and have a future beyond their caregiving role at home.

Many of them want to go and cause some form of health care. We all know that with the aging of our population, this is the labor force that's really needed. That's another benefit to supporting them. What we have done in recent years, is worked a little more closely with the aging network and services, because a lot of them are age barriers. So once a caregiving youth turns 18, and depending who they care for, they may be eligible for some additional benefits of help and resources and we want to make sure that that continues while they're in college because that's a whole other population that has yet to be fully explored. College students who are caregiving. Colleges are starting to worry about college and completion and we believe that this is one of the contributing factors to that. Sometimes it's couched in financial needs.

Even if a student drops out of high school, they may say that they have to go to work to help make money for their family. But people don't tend to look at, well what's going on in your family? Why you have to do that? Well, dad fell off the roof then he can't work any longer. So every family is different and they're just a myriad of circumstances. I would say that one of the other factors is that some of our community resources and collaborating partners may not have a full understanding of the impact of health situations on the whole family. This also carries over to the military.

For example, I was talking to someone who headed a kinship care program and she was telling me how there was this grandmother who was taking care of three orphan grandchildren and going to dialysis three times a week and everything was okay. But anyone who's worked with anybody who's on dialysis knows of some of the impact, and being tired. You just knew that these kids were helping grandma in some way or worried because a lot of times when children are being raised by grandparents, they've already gone through one trauma. Always in the back of their mind is, what's going to happen to me?

In terms of military families, the tendency has been to focus on the veterans. But what happens if that person comes home from either being deployed and now the spouse is sick or maybe grandma's moved in and now she's had a stroke and there's children in the home. The children wind up in a caregiving role. So at some point, I believe, our healthcare system has to become family centered.

If you would like to learn more, we have the website, which is simply www.AACY.org (American Association of Caregiving Youth).

My name is Dr. Connie Siskowski, and I'm aware that I'm rare.

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