Caregivers and family members play a prominent role throughout the post-stroke recovery process. But what happens when the patient has young children at home? For many young stroke survivors, learning to care for their children again tops the wish list.
The goal of stoke rehabilitation is to improve function so the patient can become as independent as possible. Generally, survivors must relearn basic skills - such as dressing, walking and eating - the stroke may have taken away. The lofty goals of a younger stroke survivor who is also a parent, however, may include carrying a baby while maintaining her own balance, changing diapers, standing to prepare a meal, and lifting a child out of the bathtub, car seat or crib.
These goals will need to be accomplished despite the common limitations of stroke, such as paralysis, weakness, and cognitive and balance issues.
"Many young stroke survivors require a different approach [than the older population] because they are more often looking at ability and returning to driving, work, school, community, and their role as a parent or caregiver," said Lynne Brady Wagner, SLP, program director of the stroke unit at Spaulding Rehabilitation Hospital in the Charlestown section of Boston, Mass.
The physical function of young patients with stroke is at a high level before coming to the hospital, according to Debra Clooney, PT, Spaulding Rehab. "They are not satisfied with just learning to walk from point A to point B," she clarified. "They are in good health aside from the stroke so they can tolerate higher-level activities, and we can be more aggressive with their rehabilitation."
Rise in Young Strokes
As reported by the Centers for Disease Control and Prevention, there has been an uptick in the occurrence of stroke among people in their 30s and 40s. Ten to 15% of strokes affect people age 45 and younger (a risk of 1 in 1,000).
Spaulding Rehab has had a specialized stroke program for many years and has worked specifically with young adult stroke patients for more than 10 years. The program treats roughly 600 stroke patients per year and more than 50% are young adults.
The steep increase in stroke among young patients can be attributed to improved diagnosis and a rise in risk factors, including obesity, diabetes, high blood pressure, and sleep apnea. Each patient's experience is different, and depends on the type of stroke and which areas of the brain have been damaged.
"The medical reasons for stroke in young adults tend to be different than in older adults," Wagner said. The program's physicians, including Randie M. Black-Schaffer, MD, medical director of the stroke program, have a vested interest in the care of the young adult patient population, which helps drive the program.
Spaulding Rehab's multidisciplinary stroke team is comprised of physicians, rehabilitation nurses, occupational and physical therapists, speech-language pathologists, psychiatrists, psychologists, social workers, music therapists, recreation therapists, nutritionists, case managers, and spiritual care.
With a dedicated stroke unit, as many as 30 patients recovering from stroke may be in the program at one time. Having this patient population together in one place and working on the same goals is one of the reasons the program is successful, according to Wagner. "This is extremely important for our younger patients who are unaware of the prevalence of young strokes and think they are alone," she relayed. "The program creates a milieu of support and understanding so patients can focus on recovery."
The stroke rehabilitation unit at Spaulding Rehabilitation Hospital in Boston staffs a range of disciplines, including (from left to right) Leah Joy Fenton, RT, Debra Clooney, PT, Johngelyn Washington, RN. Practicing real-life skills - such as caring for a small chilld with the help of a practice baby doll - helps young stroke survivors face the challenges of parenthood.
The treatment plan for older and younger stroke patients is essentially the same, explained Karen Halfon, OT, Spaulding Rehab. "Our younger patients have different goals, which drive the treatment plan," she explained. "Older patients tend to worry about daily activities such as showering and basic hygiene, while younger patients are also interested in shaving legs, painting nails and putting hair in a ponytail."
According to Halfon, adjunct healthcare skills become important to young stroke patients. It's often more acceptable for older patients to rely on a spouse or other caregiver to complete the main responsibilities at home following discharge. "Our younger patients don't want to rely on a spouse or caregiver," she said. "The list of home responsibilities for a younger person is endless. They want to make breakfast, prepare a sandwich for a child's school lunch and dress for work."
Stroke's Impact on Home Life
Occupational therapists prepare patients for child care skills such as holding, feeding and changing a baby, as well as lifting the baby into and out of a car seat, swing or crib. "Just holding a baby is a monumental task for a patient recovering from stroke," Halfon said.
That's where Ruben comes in. Ruben is a practice baby doll that helps patients safely learn and practice the duties of a parent. A patient will generally begin by holding Ruben while seated in a chair and progress to standing and walking with the doll. "Ruben can be adapted to suit the particular needs of each patient," Halfon said. "If the parent has an older baby at home, for example, we may add weights to Ruben."
The therapists incorporate the patient's childcare goals into the traditional program. The patient may practice standing at the changing table and reaching for a diaper instead of standing at the mat table and reaching for a ball, as in traditional therapy. Higher-level patients may practice putting a diaper on with one hand.
For patients preparing for the demands of parenthood, PT focuses on tasks that translate to child care activities, such as bending, carrying and reaching. "OT drives the plan for child care," said Debra Clooney, PT, Spaulding Rehab. "But we work in conjunction with OT."
According to Clooney, PTs make their session goals more comprehensive by assisting patients with getting up and down from the ground to play with children, and learning to walk while carrying a baby or a diaper bag.
Child care doesn't just take place in the home, so it's important that these patients are prepared for the demands of work, school and the community. "We push to get them back into the community by practicing walking long distances, going up and down stairs, and getting acquainted with various terrains," Clooney explained.
To improve function, patients engage in bodyweight supported treadmill training, use a foot drop system to contract muscles while walking, and are fitted with appropriate braces and adaptive equipment for ambulating in the community.
According to Wagner, recreational therapy is critical to the program because there is a connection between working on activities and moving to the community. These patients were active and healthy pre-stroke, so community involvement is important to instill independence and confidence, according to Leah Joy Fenton, RT, a recreation therapist with Spaulding Rehab who works with the adaptive sports program and community reintegration.
"I consider their activities before coming to the hospital and tailor my activities to what they have been doing," Fenton said. "I work with these patients on canoeing, biking, windsurfing, and kayaking as part of functional therapy."
In conjunction with OT and PT, Fenton takes patients into the community to practice the functional skills they learned in the hospital in a real environment. "We may visit the mall or a museum and practice walking with or without an assistive device, with the help of therapist," she said.
For individuals with children, most leisure time is spent together as a family, observed Fenton. "I prepare my patients to participate in activities with their children," she said. "Do the kids like arts and crafts? Kicking a soccer ball? I co-treat with OT and PT to make sure our activities mimic what they are doing at home."
Speech-language pathology is crucial for preparing patients for activities such as reading to a child or helping with homework. "We help patients think about and then develop a schedule for when they return home," said Marianne Connor, SLP, Spaulding Rehab. "We address the patients' cognitive issues and work on knowing the names of their children and where they go to school."
The SLPs assess whether a patient is able to return to work. To prepare for the workforce, Connor works with patients on researching, writing and giving a presentation to the staff. "Because this population is so young, we often incorporate computers and technology into treatment activities," she said.
The nursing team is the first to meet and greet the patients at Spaulding Rehab. "Because we have the first contact, we relay their concerns to the team," explained Johngelyn Washington, RN, staff nurse, Spaulding Rehab. "Usually they are emotional and scared and have a lot of questions."
One of the biggest concerns, according to Washington, is the role of family during the hospital stay. "We are respectful of their time together and try to optimize visiting times for the families," she said.
The staff aims to present a positive experience for visiting children so they are prepared when their parents return home. "It helps them feel engaged in the process, and often helps the patient engage more and motivates them to work hard to get home," Wagner said.
It's important to prepare children for the changes their parents have gone through, Washington told ADVANCE. "It's helpful for children to see what goes on here so they know we aren't hurting the parents," she shared.
Older children are often incorporated into treatment sessions, according to Halfon. "We will have a child participate in treatment to help the parent meet goals and be more motivated. We may have them throw a ball to each other because it's a familiar activity with functional benefits."
In addition, Spaulding Rehab offers a peer visitor program to further motivate and prepare patients for the return home. There are 10 active peer supporters on hand each month to help current patients know they're not alone, and to witness life after stroke first-hand.
"We promote independence and a return to the normal routine," said Washington. "We offer interested patients a practice night with a spouse in our functional living apartment to better prepare for the return to home and family."
Rebecca Mayer Knutsen is on staff at ADVANCE. Contact: email@example.com