Twins Mia and Sarah Rosenbaum each weighed barely more than a pound when they were born at just 27 weeks. Their survival alone was a miracle, but complications at birth left Sarah with cerebral palsy and, later, epilepsy and other lifelong challenges that would shape both their lives.
Growing up in Boca Raton, FL, Mia wasn't just Sarah's sister—she became her fiercest protector, translator, and, in many ways, her caregiver. While other kids learned to ride bikes and play soccer, Mia learned how to help with feeding tubes and to navigate a world that often didn't know how to make space for someone like her sister.
Now nearly 17, Mia reflects on a childhood marked by deep love and quiet sacrifice. “We've always been attached at the hip,” she says. “Even now, I don't go to sleep without telling her, ‘I love you. Best sissy ever.’”
Across the United States, an estimated 5.4 million children and teens quietly shoulder responsibilities far beyond their years. These young caregivers help parents, grandparents, siblings, and other loved ones living with chronic illnesses, disabilities, and neurologic conditions—often balancing these duties with school, friendships, jobs, and their own social and mental development.
Among them is a small but growing group: sibling caregivers. A 2016 study estimated that about 83,000 young people in the United States were caring for siblings with chronic or disabling conditions. Today, that number is believed to be significantly higher and expected to keep rising.
“We know that siblings move in and out of caregiving roles as their family dynamics shift, more so than other categories of family caregivers, and they may not self-define as a caregiver, especially when they are younger,” says Kaitlin McNamara, executive director of the Sibling Leadership Network, a national nonprofit that supports siblings of people with disabilities.
Caregiving provided by siblings often goes unrecognized not only by health care professionals, educators, and researchers but also by their own families, according to a 2023 report by the Caregiving Youth Research Collaborative.
Just like adult caregivers, children who provide care have a wide range of experiences. Some may help out occasionally during the week as secondary caregivers, while others take on demanding roles on a daily basis, sometimes even caring for more than one family member. They often provide year-round support. Becoming a sibling caregiver can happen suddenly, with little warning, or it may evolve over time as a child becomes more involved in understanding a sibling's needs and supporting parents in decision-making.
Siblings may mainly interact with each other through play when they are younger, but it's not all fun and games when they become caregivers. Mia witnessed her sister have a grand mal (generalized tonic-clonic) seizure that lasted for 90 minutes when they were 11. Sarah was air lifted from Boca Raton to Miami, where doctors finally got the seizure under control. “I was scared out of my mind,” Mia says.
Encourage, Don't Enforce
In families with children who have complex medical needs, siblings often find themselves in a unique and emotionally complicated position. The bond between siblings can be a powerful source of connection, empathy, and support, but experts emphasize the importance of avoiding pressure or expectations that push siblings into caregiving roles before they are ready.
“Parents should be careful not to assign responsibilities that exceed a child's age or emotional capacity,” says Sonika Agarwal, MD, FAAN, associate professor of neurology and pediatrics at the Children's Hospital of Philadelphia. “While some siblings want to help, they may also feel overwhelmed or resentful when the majority of attention goes to their sibling with medical needs. As far as possible, parents should carve out one-on-one time so that each child feels seen, valued, and heard.”
Dr. Agarwal encourages families to involve support professionals, like child life specialists, who help children and families cope with illness. These specialists help siblings process their emotions, ask questions, and better understand the other child's medical condition and their family's situation. “The goal isn't to train a sibling to become a caregiver,” she explains, “but to create an environment where they feel supported, valued, and participate based on their developmental level.”
Amoy Gordon, a social worker and director of the Caregiving Youth Project at the American Association of Caregiving Youth, echoes that sentiment. “We can't expect young siblings to shoulder complex medical responsibilities,” she says. “For children under 5, involvement should be limited to safe, age-appropriate tasks—like carrying small items or offering reminders. Their role should always match their developmental stage.”
Age-appropriate Roles
As children grow, their involvement in caregiving can naturally evolve, but this involvement must always be guided by open communication, emotional readiness, and individual choice. For younger children, especially those under 12, caregiving responsibilities should remain minimal. Tasks such as medication management or complex medical duties are not suitable at this age, Dr. Agarwal says. “Instead, their support might include simple, safe actions, such as helping with play or story reading activities or tidying up, always matched to their comfort level.”
There is no one-size-fits-all approach to sibling caregiving, Gordon says. “The most important thing is to create an environment where the sibling's participation is always a choice,” she adds.
This means letting siblings step back from caregiving without guilt or fear of disappointing their family. It also means ensuring that their relationship with their sibling is allowed to flourish both inside and outside of caregiving.
As they mature, older siblings might take on roles such as offering emotional support, assisting with school advocacy, or even helping with early intervention exercises. Teenagers and young adults may eventually prepare for more involved caregiving, but only when they are emotionally equipped and genuinely willing.
Communication with sibling caregivers must include space for emotional honesty. “We often hear from young siblings who have many questions and anxieties but are afraid to burden their families,” Gordon says. “They need to know it's okay to ask and okay to feel scared or sad. These emotions are normal and should be acknowledged—not dismissed.”
Involving siblings in conversations about a brother or sister's diagnosis or health updates should never be an assumption—it should be an invitation. Some siblings may want detailed information; others may not.
Nathan Grant's twin brother, Nik, was diagnosed at birth with a rare neurodegenerative disease called Hunter syndrome, also known as mucopolysaccharidosis type II, which in his case has led to behavioral disorders such as aggression, outbursts, and impulsivity. From an early age, Grant, who lives in Loveland, OH, wanted to better understand Nik's condition and how he could help.
Equally important is how families talk about disability. If it's only framed in terms of challenges, fear, or burden, siblings may internalize harmful ideas and perceptions that shape their relationship with their brother or sister. “It's okay to feel complex emotions, but we need to model healthy, compassionate attitudes that help siblings grow into confident, empathetic individuals—regardless of how involved they choose to be,” Dr. Agarwal says.
Prepare for the Future
Experts emphasize that proactive planning, including involving siblings early on in conversations about the patient's key life transitions, is vital and sets the stage for later financial and guardianship arrangements. As they get older, youth caregivers should be included in discussions about guardianship, power of attorney, and financial matters, Dr. Agarwal advises: “Early inclusion fosters preparedness and reinforces the idea that caregiving is a shared responsibility by the whole family.”
At Boston Children's Hospital, a structured program focusing on the transition to adult care includes honest, supportive conversations about long-term caregiving responsibilities, particularly what happens when aging parents can no longer provide care.
“Rather than assume siblings or others will step in, a care team encourages families to create a plan,” says pediatric neurologist David Urion, MD, FAAN, director of education at Boston Children's Hospital. “The team offers guidance on guardianship [and] estate planning and connects families with local special needs attorneys. The hospital emphasizes early involvement of potential future caregivers, like siblings, so they understand medical routines, care needs, and expectations before they're suddenly expected to take over.”
Grant, now 27, was not initially included by his parents in decisions about Nik's future. This was frustrating when he was a teen, as he often had to initiate conversations. But now that he is a medical student at Harvard University, Grant plays a greater role, especially when it comes to medical decisions. “I think my parents tried to protect me, but what I really needed was to be included because I was going to be part of Nik's future, whether anyone said it out loud or not,” Grant says.
Tara Conley of Asbury, IA, has devoted her life to caregiving and advocacy, an effort shaped by deeply personal experiences. Her journey began in childhood as she cared for her younger brother, Nick, who had cerebral palsy, muscular dystrophy, and, like Tara, Charcot-Marie-Tooth disease—a rare neurodegenerative condition that causes muscle weakness and atrophy.
Tara took on more responsibility, especially as her parents got older. “When our mom got sick, it became clear I needed to step up,” she recalls. “I knew how to talk to doctors; I knew the treatment regimens. It was already part of my world.”
In 2007, driven by her experience and passion to support others in similar roles, Conley founded a nonprofit called Supporting Illinois Brothers and Sisters, dedicated to helping fellow sibling caregivers navigate their own caregiving journeys. Nick passed away in 2019, but Tara continues to honor his legacy through her work and advocacy.
Planning is an ongoing process that caregivers need to revisit as circumstances change. Resources like the Caring Futures program offer guidance in creating a “letter of intent” outlining the individual's desired future and necessary support, encouraging caregivers to decide their direct participation in decision-making for future care.
Age-Appropriate Caregiving Roles for Siblings
Caregiving responsibilities can vary with a sibling's age, the severity of their brother or sister's condition, and the availability of adult or professional support. “The reality is that sibling caregivers do it all,” says Connie Siskowski, RN, PhD, founder and president of the American Association of Caregiving Youth. “Siblings ages 6 to 11 years old may have to step up sooner in the absence of an adult.”
Here's how experts say a sibling's caregiving tasks may vary by their age.
Ages 5 and younger
While this age group often is less formally involved in caregiving, children may help their brother or sister in simple, supervised ways, such as:
- Bringing food or drinks
- Picking up dropped items
- Playing simple games with their sibling
- Watching television with each other
- Playing with toys together
- Engaging in picture books together
Ages 6 to 11
Caregiving responsibilities may start to grow among kids of these ages, as they help by:
- Preparing simple snacks or meals
- Listening to music with their sibling
- Doing arts and crafts together
- Teaching and playing games with their sibling
- Reading and looking at books together
Ages 12 to 18
Older siblings often get more involved in regular care and support. Activities they may be able to take on include:
- Cooking light or full meals
- Cleaning
- Doing laundry
- Bathing, dressing, and changing diapers for their sibling
- Administering or reminding their sibling about medications
- Helping with mobility, such as by lifting or moving their sibling
- Monitoring their sibling's safety
- Providing emotional support
- Helping their sibling with homework or school activities
- Exercising together
Sibling Caregiving Online Resources
