WHOLE CHILD CARE

Consider patients’ emotional and psychological needs when treating children with limb loss

How well do you know your pediatric and adolescent patients? Could you spot the signs of a mental health challenge during a routine visit? You should. Given the wide range of emotions that come from living with limb loss or limb difference, many pediatric O&P patients benefit from mental health intervention.

“Youth with limb loss or difference are overwhelmingly resilient, and research shows high rates of positive adjustment as they reach maturity; however, their journey can be very hard at times,” says Catherine

NEED TO KNOW:

f Many children with limb loss benefit from psychological counseling to help them manage their emotions relating specifically to their limb difference—in addition to more general mental health challenges that arise.

f Children may experience shifting challenges as they grow and enjoy gains in their cognition and abstract reasoning; they may develop “feelings of difference,” and seek ways to overcome limitations.

McClellan, PhD, chief of behavioral health at Shriners Children’s—Portland. “Unwanted attention about their limb difference has been identified as one of the hardest parts of growing up with limb loss,” says McClellan. “Importantly, we know that the degree to which a patient is ‘bothered’ by this attention moderates the negative impact it can have. Psychologists and therapists can support these patients by preparing them with healthy ways to manage the distress that can be associated with unwanted attention to their limb difference.” f It’s important for O&P professionals to pay attention to children’s mental health needs beyond the issues associated with their limb loss—particularly given the high levels of anxiety and depression among children and teenagers. f Both mental health professionals and O&P clinicians benefit from collaborating. Prosthetists can seek out local psychologists, and offer training on limb loss or difference to mental health professionals. f Prosthetists should consider offering programs that could help boost mental health among young patients— for example, “partnering” patients with other patients of similar age, or hosting support groups for families.

Among the many issues facing pediatric O&P patients are a disproportionate degree of bullying; distress surrounding their limb difference, including worries about future employment; feelings of difference; and feeling left out of athletics or other social rites of passage, according to McClellan.

Benefits of Intervention

Ginger Depp Cline, PhD, ABPP, a board-certified pediatric psychologist at Texas Children’s Hospital and associate professor at Baylor College of Medicine, sees many patients throughout all stages of amputation and prosthetic care. Cline points to a two-step process in working with children with limb loss: “First, let them talk about what it’s like for them—talk about their differences, and reflect back the emotions they’re experiencing—i.e., it’s not fair, feeling sad, etc.,” she says. “Then, you can work on supporting their adjustment if needed.” She prioritizes open, honest, and developmentally appropriate communication as well as active listening.

Many pediatric psychologists leverage cognitive behavioral therapy (CBT) tactics, which can be particularly useful among children with limb loss, according to Julia Kovalenko, PhD, a pediatric psychology fellow at Texas Children’s Hospital. CBT has been demonstrated to be effective for a range of problems including depression, anxiety disorders, eating disorders, and severe mental illness, according to the American Psychological Association (APA). CBT treatment usually involves efforts to change thinking patterns, by learning to recognize one’s distortions in thinking and reevaluating them in light of reality; using problem-solving skills to cope with difficult situations; and learning to develop a greater sense of confidence in one’s own abilities.

As children recover from an amputation and progress through rehab, psychological intervention can be necessary. “Some kids do really well returning to their activities” postamputation, says Kovalenko, “but we want to make sure we are improving their quality of life.” Children can develop anxiety before or after surgery, or they can feel anxious about using their prosthesis correctly. “They may experience changes in mood from not being able to participate in activities in the same way, or develop self-esteem issues,” she says. Mental health professionals also can assist patients in learning to manage chronic or phantom pain.

McClellan helps patients develop strategies to cope with unwanted attention, promote positive thinking about appearance, and develop confidence and robust social skills to manage limb loss-related anxiety and depression. “Cultivating body confidence can also be important to interpersonal relationships, especially future romantic relationships. Additionally, for youth who faced amputation after trauma or cancer, mental health intervention is often needed to address this major change and treat associated trauma,” she says.

Psychological intervention can help promote prosthesis use, “especially when it is initially introduced, and in facilitating parentchild dynamics surrounding prosthesis use,” adds McClellan, who, in addition to her responsibilities in developing and implementing hospital-wide programming, works with prosthetic and orthotic patients. She completes presurgical consultations for youth and families facing amputation, provides counseling for those adjusting to limb loss and youth who have congenital amputation, and promotes TLSO bracing adherence for scoliosis patients.

Considerations by Age

O&P professionals should be aware that psychological approaches and treatment goals differ tremendously by age, according to McClellan.

“For very young patients, much of the work is supporting parents so that they can model adaptive coping, manage their feelings of grief and guilt, and build a support network, often with other parents of children with limb difference,” says McClellan. “Research shows that parents typically overestimate the negative impacts of limb loss on their child functioning, which can result in overly accommodating or protective behaviors. Very young children may not be fully aware of their difference, and preschool age youth are often very accepting of limb loss or difference.”

Parental grief can be particularly strong for parents of children with congenital limb loss, adds Emily Gale, PhD, LP, ABPP, a pediatric psychologist at Scottish Rite for Children. “We can figure out the best way to support those families,” some of whom may be feeling unwarranted guilt over their children being born with limb difference.

Needs shift among school-age children, ages 6-11, who “enjoy gains in their cognition and abstract reasoning,” says McClellan. At this age, many children go through a grieving process and begin to experience increased scrutiny for their physiological difference from their peers.

“As children get older, they typically start noticing other people noticing their limb difference,” says Cline. “They may need normalization support of others being curious, and then coaching for how they want to respond to this.”

“Most kids do great until middle school,” agrees Gale. “That feeling of ‘difference’ is salient in the middle school years, but for someone whose body looks different in a very visible way, it can be really difficult. A lot of kids start to wear pants even in summer” to hide their prosthesis. “A lot of my work with that age group is about accepting your body, thinking of your prosthetic as a part of you but also as a tool that helps you keep up with other kids, that also helps you play the sports you want to play or do the activities you want to do.” She also helps patients build resiliency if they are being bullied or feeling different.

During high school, issues with depression or anxiety may emerge, says Gale. There may be less concern about the actual prosthesis, “and more concern about you as an emerging adult who needs psychological support.” Some teenagers also need help accepting—or overcoming—their limitations in activities, she says. “It’s about normalizing that process and figuring out how they can adapt to wearing a prosthesis in sports.”

Gale also works with teenagers as they get ready to graduate high school and move out on their own. “Some kids will still have their parents help them with care for their prosthesis, or help figure out socks and liners, and when they need a new prosthesis,” she explains. “We work on moving toward the teenager taking over those self-care skills they’ll need in managing their prosthesis for the rest of their life.”

General Anxiety and Depression

It’s important for O&P professionals to pay attention to children’s mental health needs beyond the issues associated with their limb loss—particularly given the high levels of anxiety and depression among children and teens in the U.S. More than 2.7 million children and adolescents are living with severe mental depression, and 60% of youth with major depression receive no mental health treatment, according to a 2023 report from Mental Health America. Statistics like those demonstrate the value of all healthcare providers monitoring for signs of depression and anxiety, and connecting children with mental health professionals who can help.

“Our country is facing a major mental health challenge, and our children and teens are the most impacted,” says McClellan. Young people increased their usage of screen time and social media during the pandemic, “resulting in worsening mental health and body image,” she says—with “unique impacts on our youth with limb loss and difference.” For example, she notes that families who have lost income or insurance may struggle to travel to, or afford, prosthetic care. “There has been a decrease in opportunities for social activities and pursuits, which increases isolation and reduces healthy peer interaction and feelings of proficiency and achievement.”