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Walking With You: Caregiver Resources for Families at Arkansas Children’s
Published date: November 16, 2023
When a child is diagnosed with a life-altering illness, parents and guardians must suddenly navigate their new role as a caregiver. It can be daunting to balance work, family and finances, all on top of the fear of the unknown.
There are several ways ACH empowers caregivers to be more confident, embracing this journey through emotional support and resources.
Sarah Wolven, strategic initiatives project manager and Family Advisory Board coordinator, a parent caregiver herself before joining the staff at ACH, said the health system’s core values of safety, teamwork, compassion and excellence embody what it means to care for the caregiver.
"I love that our values are linked to caring for our caregivers. Safety, for example, we're ensuring that our caregivers are confident, comfortable and cared for so that we can have a safe environment. With teamwork, our care team includes our caregivers because they know their child the best. Teamwork is not just our medical staff and everyone here at Arkansas Children's Hospital, it is the parents and caregivers, it is the child, it is hearing all of the voices to that big picture," Wolven said. "Compassion is how we show that our caregivers mean something to us and that we truly care about them and their child. All those things together create the right environment for excellence."
At its core, being a caregiver means "putting someone else before yourself," Wolven explained. As a parent, it means providing a new level of care for your child.
"When you're a caregiver or parent, you love that child. You do everything you can to make things easier for them. When they hurt, you hurt; when they're happy, you're happy," Wolven said. "When they have these triumphs and reach these big goals, you feel like you're doing that with them. When they have setbacks, you feel like you're taking steps backward because you are. You're on this journey with them to help them."
It can also mean letting go of picture-perfect plans for your child's future. It's a reality Wolven herself faced when, at 34 weeks, she began to go into labor with her first child, Emerson Sikes. Her now 7-year-old son was diagnosed with short bowel syndrome and has had most of his small intestines removed. He has been an ACH patient since the day he was born.
"I imagined a perfect little family. A lot of first-time moms get all the things for their babies. You get your little room set up, and all these things are perfect. My son had to be in the NICU for four months," Wolven said through tears. "We had his little room set up way in advance because we were just so excited. We had all the baby things he would need to be cared for in the first few months of life. Because we didn't take him home until he was four months old, we didn't get to use a lot of the stuff or get to put him in certain clothes because he was always attached to cords."
But for Wolven and other parent caregivers like her, she said, “You learn to find the light in the most unexpected places.”
“I would say being a parent of a medically complex child just almost forces you to value all the little things in life and value how special life is,” she said.
Beyond the hopeful moments, caregiving can be challenging. Balancing doctor's appointments with school and work schedules, caring for other children in a family, financial burdens and facing medical setbacks can all cause stress and burnout for parent caregivers. Wolven said there are moments of discouragement, defeat, helplessness and other negative thoughts.
However, ACH team members walk with caregivers during triumphs and challenging times. Wolven remembers one surgery while her son was in the ACH NICU in which the medical team could not tell her whether her son would survive.
"I went to the Central Family House and had a really, really bad breakdown. I was in such a negative mindset. I just assumed my son wasn't going to make it. I pictured all of his milestones in my head - his first birthday, never going to have that; his first day of kindergarten, not going to have that," she said. "One of our staff members just happened to be in the Central Family House at that time. And it wasn't his job to look for parents in distress. But he saw me over there crying, and he came over to me and I just told him, 'They said the next 24 hours are going to be critical, he's not going to make it.' And that staff member said, 'When your son grows up to be big and strong, do you want him to look back and think, my momma didn't believe in me?' And I'll never forget that."
Today, Emerson, one of 21 current patient ambassadors for ACH, has grown in confidence because of the way ACH team members have helped him embrace his journey.
"I named my son after Ralph Waldo Emerson, one of my favorite writers. One of his quotes is, 'We acquire the strength we have overcome.' And I love to think about that because everything we go through will make us stronger somehow," Wolven said.
ACH has several resources for caregivers inside and outside the hospital, primarily through social work and family services assistants.
The Winnie M. Lowe Family Resource Center offers a variety of materials, including books and media to help parents navigate their child’s diagnosis, as well as a business center with computers that caregivers can access.
Visit the FSA webpage or call 501-364-1247 for more information.
In addition to these resources, families can access breastfeeding areas, the chapel, pastoral care and Resource Connect, a search tool on the Arkansas Children’s website that helps individuals find free or reduced-cost services like medical care, food, job training and more.
Sarah Wolven, strategic initiatives project manager and Family Advisory Board coordinator, a parent caregiver herself before joining the staff at ACH, said the health system’s core values of safety, teamwork, compassion and excellence embody what it means to care for the caregiver.
"I love that our values are linked to caring for our caregivers. Safety, for example, we're ensuring that our caregivers are confident, comfortable and cared for so that we can have a safe environment. With teamwork, our care team includes our caregivers because they know their child the best. Teamwork is not just our medical staff and everyone here at Arkansas Children's Hospital, it is the parents and caregivers, it is the child, it is hearing all of the voices to that big picture," Wolven said. "Compassion is how we show that our caregivers mean something to us and that we truly care about them and their child. All those things together create the right environment for excellence."
What It Means to Be a Caregiver
At its core, being a caregiver means "putting someone else before yourself," Wolven explained. As a parent, it means providing a new level of care for your child. "When you're a caregiver or parent, you love that child. You do everything you can to make things easier for them. When they hurt, you hurt; when they're happy, you're happy," Wolven said. "When they have these triumphs and reach these big goals, you feel like you're doing that with them. When they have setbacks, you feel like you're taking steps backward because you are. You're on this journey with them to help them."
It can also mean letting go of picture-perfect plans for your child's future. It's a reality Wolven herself faced when, at 34 weeks, she began to go into labor with her first child, Emerson Sikes. Her now 7-year-old son was diagnosed with short bowel syndrome and has had most of his small intestines removed. He has been an ACH patient since the day he was born.
"I imagined a perfect little family. A lot of first-time moms get all the things for their babies. You get your little room set up, and all these things are perfect. My son had to be in the NICU for four months," Wolven said through tears. "We had his little room set up way in advance because we were just so excited. We had all the baby things he would need to be cared for in the first few months of life. Because we didn't take him home until he was four months old, we didn't get to use a lot of the stuff or get to put him in certain clothes because he was always attached to cords."
But for Wolven and other parent caregivers like her, she said, “You learn to find the light in the most unexpected places.”
“I would say being a parent of a medically complex child just almost forces you to value all the little things in life and value how special life is,” she said.
Beyond the hopeful moments, caregiving can be challenging. Balancing doctor's appointments with school and work schedules, caring for other children in a family, financial burdens and facing medical setbacks can all cause stress and burnout for parent caregivers. Wolven said there are moments of discouragement, defeat, helplessness and other negative thoughts.
However, ACH team members walk with caregivers during triumphs and challenging times. Wolven remembers one surgery while her son was in the ACH NICU in which the medical team could not tell her whether her son would survive.
"I went to the Central Family House and had a really, really bad breakdown. I was in such a negative mindset. I just assumed my son wasn't going to make it. I pictured all of his milestones in my head - his first birthday, never going to have that; his first day of kindergarten, not going to have that," she said. "One of our staff members just happened to be in the Central Family House at that time. And it wasn't his job to look for parents in distress. But he saw me over there crying, and he came over to me and I just told him, 'They said the next 24 hours are going to be critical, he's not going to make it.' And that staff member said, 'When your son grows up to be big and strong, do you want him to look back and think, my momma didn't believe in me?' And I'll never forget that."
Today, Emerson, one of 21 current patient ambassadors for ACH, has grown in confidence because of the way ACH team members have helped him embrace his journey.
"I named my son after Ralph Waldo Emerson, one of my favorite writers. One of his quotes is, 'We acquire the strength we have overcome.' And I love to think about that because everything we go through will make us stronger somehow," Wolven said.
Resources for Caregivers
ACH has several resources for caregivers inside and outside the hospital, primarily through social work and family services assistants.
Social Work
The social work team includes 58 licensed social workers, including behavioral health specialists, who work across the hospital in inpatient units, specialty clinics and on dedicated teams focusing on child maltreatment and mental health. Each is a licensed mental health professional who offers specialized knowledge of resources, helping caregivers navigate their needs, including:
- Referrals to community support and advocacy groups that coincide with a child’s diagnosis
- Assist families in applying for foundations and grants that offer financial assistance for illnesses or emergencies
- Referrals to local agencies that help with emergency or long-term lodging for those with a child in the hospital
- Partner with Helping Hand of Greater Little Rock to provide groceries for those with food insecurity
- Limited financial transportation assistance for unexpected admissions; connecting families with community transportation resources for chronic needs.
- Assessment and support for families facing a medical crisis or chronic illness, including post-partum screening, brief counseling and referrals, early intervention for acute stress disorder and general counseling for adjustment to illness needs
Family Service Assistants
Family service assistants (FSAs) partner with social work to provide daily oversight of the Emergency Department, ICU Family Houses and waiting rooms. They assist with:
- Hotel Guides
- Ronald McDonald House Applications
- Assistance with meals
- Local bus transportation information
- Medicaid transportation
- Clothing assistance due to an unexpected admission
- Toiletry care packs
- Laundry detergent
The Winnie M. Lowe Family Resource Center offers a variety of materials, including books and media to help parents navigate their child’s diagnosis, as well as a business center with computers that caregivers can access.
Visit the FSA webpage or call 501-364-1247 for more information.
Family Advisory Boards (FAB)
Arkansas Children's promotes patient- and family-centered care in many ways, including hearing directly from families. Family Advisory Boards (FAB) include parents or legal guardians of patients, as well as advisory roles for hospital leadership and team members. Their goals are:
- To offer ideas and suggestions regarding policy and practice that affect family-centered care
- To review recommendations and concerns referred to the board by parents, staff, providers or administration
- To serve in an educational role, as needed or requested, regarding patient/family perceptions of care and services