Continuous Psychological Care

For some pediatric patients who undergo amputation at children’s orthopedic hospitals, psychological care is part of the continuum of care, starting before surgery.

Emily Gale, PhD, LP, ABPP, a pediatric psychologist at Scottish Rite for Children, sees many patients throughout the amputation and rehabilitation process. Her patients include those with congenital limb loss or difference, as well as trauma and cancer patients. Tailoring the treatment to the needs of the patients and their families is extremely important, says Gale, with some children benefiting from extra visits.

“We’ll talk about any psychiatric symptoms that are present; we’ll do some preoperative education about what the family knows, and what the family needs to know; and we’ll set some realistic preoperative and postoperative expectations,” she says. “Most of my preoperative consultations focus on pain management and family support—making sure that everyone knows how to manage pain and what the goals are for the surgery.”

Even more alarming, “we have seen a sharp increase in the rates of youth suicide in the U.S., often stemming from feelings of difference, poor body image, and social dynamics,” McClellan says. “Youth with limb difference experience these feelings of difference at a higher rate than youth without orthopedic conditions.”

Those feelings may be exacerbated among patients with lower-limb loss, who are more likely to experience bullying and have fewer opportunities to participate in sports and social activities, says McClellan. “Some work has shown that youth with unilateral upper-limb difference compare similarly to their non-limb-difference peers on measures of health-related quality of life.” She also notes that gender is a contributing factor: “Interestingly, girls and young women with limb loss or difference typically fare worse than their male counterparts, regardless of the site of the limb loss or difference. With our increasingly appearance-focused society, cultivating a healthy body image can be an uphill battle.”

O&P practitioners can help identify patients at risk. Some signs to look for include struggles adhering to the recommended treatment protocol, intense parent-child conflict, apathy, and novel patterns of disengagement, according to McClellan. At Shriners Children’s—Portland, “we instituted universal suicide screenings, and it has been immensely helpful in identifying youth at risk,” she says. “It is important for providers to have the information they need, should a patient voice suicidal ideation, including where patients can go for an urgent mental health consultation—often

Postsurgery, Gale continues to follow her patients through the prosthetic process. Children who are going through their first amputation comprise Gale’s biggest patient population: “making sure they understand not only the surgery process, but also the recovery, getting into a prosthesis, and adjusting to life with a prosthesis.” She likes to “keep the expectations realistic” and monitor patients to ensure they’re not experiencing mood changes; she also helps them with general adjustments to life with a prosthesis.

“Sometimes [the rehab process] can feel a little frustrating, especially for high-functioning kids who just want to get back to activities they enjoyed preamputation, such as sports,” Gale says. “It can be hard to slow them down and let them adjust to the prosthesis, so keeping those expectations very realistic is my main role.” offered through community mental health sites.” She suggests that O&P providers normalize discussions of mental health by posting flyers or making resources available in their clinic. “The National Child Traumatic Stress Network is a wonderful site for resources.”

Prosthetist-Psychologist Connections

Partnerships between both mental health professionals and O&P clinicians can be mutually beneficial. Gale works closely with many of the prosthetists who treat her patients. “They’re seeing these patients a lot more frequently than I am, so I rely on them to tell me if they notice changes in their patients, or find that they’ve stopped participating in some activities.”

When working with children, Cline suggests that prosthetists solicit some general adjustment feedback. “Ask: ‘What things are going well, and what’s been hard for you? What’s making you feel sad/happy/frustrated/worried/hopeful lately? How have you been feeling?’ These questions open the door,” she says. If the patient appears to be in any type of distress, it may be helpful to reflect their feelings back and possibly “consult with a psychologist” and/or refer the child/family to mental health services. Cline also suggests that O&P professionals encourage parents to look for resources in their children’s schools (i.e., Section 504 accommodations for returning to school, etc.), and to check with their insurance for referral options.

McClellan suggests contacting the state association of psychologists to reach providers who have an interest in pediatric psychology or specialized experience or training. O&P professionals could provide training on limb loss or difference, or be available for consultation as needed, to help psychologists and mental health professionals “get up to speed so that they can modify their approaches to meet the unique needs of the population,” she says. “Many psychologists would welcome the opportunity to learn more about the limb loss/difference population and develop expertise, but opportunities are needed to foster this collaboration.”

Prosthetists also should consider offering programs that help boost mental health among young patients—for example, “partnering” patients with other patients of similar ages, ensuring patient privacy and HIPAA compliance, says Cline. She also recommends that prosthetists educate patients and families about camps and local activities for children with limb loss.

McClellan believes O&P professionals are positioned to model adaptive approaches to limb difference, to emphasize ability, and to instill pride. “They can check with patients on negative comments or unwanted attention, and share how other patients have found adaptive ways to cope. Pairing families with mentor families provides reassurance and a sense of community that can be hard to replicate.”

She also suggests using positively framed language when speaking with pediatric patients. For example, “providers are encouraged to reconsider using the term ‘stump’ to describe a residual limb,” McClellan says. Prosthetists should ask patients how they would like to refer to their shorter or residual limb: “While the terminology ‘stump’ is well-understood and commonly used within medical settings, this term is neither attractive nor sensitive to the needs of youth who may already be hyperaware of their body difference.”

“It is so important to be aware of the impact that a medical care provider can have on a patient’s self-concept and sense of selfworth, and how it can result in optimal care,” adds McClellan. “While our O&P providers are not with patients on a daily basis, they are often a consistent and long-term presence in the life of a child. Making a connection with the child about their personal interests, sharing stories of patient successes and frustrations, and normalizing how hard unwanted attention can be helps youth feel heard and understood.”

“I just hope that the conversation about mental health is something that more people start to feel more comfortable discussing,” says Gale. “We have to treat the whole child. I really encourage clinicians to educate themselves about how they can talk to kids more competently about mental health, in a non-stigmatizing way. And know that if a child tells you something, there are mental health professionals who are willing to help. Sometimes addressing those mental health needs can help your prosthetic goals move a lot faster.”