Instilling Confidence in Parents of Children With Limb Loss

Helping children and their parents cope with limb loss and navigate through the process of becoming a prosthetic user is one of the many challenging tasks prosthetists are faced with in their practice. Instilling confidence, building trust and forming a bond with both parents and children are crucial to ensure the process goes smoothly for everyone.

Provide a treatment blueprint

The first step in building trust and instilling confidence is to lay out a blueprint and offer families an overview of the entire process. By providing parents and children with a detailed explanation of what they can expect during the next several months, prosthetists can prepare families beforehand by addressing any concerns regarding the treatment plan so there are few surprises.

“One of the most important things that a prosthetist can do in general is try to understand the parents’ concerns and address any concerns that they might have regarding their child with limb loss,” said Branden Petersen, CP, a national upper extremity specialist in the upper extremity prosthetics program at Hanger Prosthetics & Orthotics. “Typically, when they come in for the first office visit, it is very important to address any questions that they have and lay out the plan before them so they know the steps and are not going to be surprised by anything that pops up.”

In addition to providing a timeline of what to expect during their treatment, the initial visit should include basic information and patient education regarding prostheses.

Tyler Byrom
Tyler Byrom
All images printed with permission of Hanger Prosthetics & Orthotics, Inc.

“When we deal with young congenital limb loss patients, we talk to the parents about normal developmental milestones and our goals to help their child achieve and parallel normal development,” said Ron Gingras, LPO, director of the Tampa Shriners Hospital orthotics and prosthetics department.

“When the families come for a clinic visit they are together with other families with children who have many different physical challenges and they quickly realize they are not alone,” Gingras said. “We try to instill confidence by providing a plan, showing the family the componentry that is appropriate for their age and trying to answer any questions that they may have.”

Because many parents and children have little or no experience with prostheses and limb loss, showing them pictures or actual prosthetic devices and explaining how a prosthesis works can help families know what to expect. In addition, defining unfamiliar prosthetic terms that patients will encounter is helpful.

“We educate them on what a prosthesis is, what it looks like and what the different parts are, like the socket and the liner, so they are familiar with the different terminology,” said Michelle Slider, CP, a prosthetist with Philadelphia Shriners Hospital orthotics and prosthetics department. “I will ask them do they know anything about prosthetics? Have they ever met an amputee before, or have they known one? We go with what information they know and then try to encourage them that they can have a great outlook on life and they can be just as functional as any other child.”

Individualize treatment and address concerns

Tailoring information and education to each family also is important. Because each family is different and brings various cultural, communication and familial issues that need to be considered, there is no standard approach, Gingras said.

“We deal with many different familial scenarios,” Gingras said. “We have various methods of approaching each child because there are different issues for different families.”

Reassuring parents and addressing their concerns are paramount. In response to their child’s anxiety, parents’ anxiety levels can be expected to increase proportionately as they work to put the child at ease. However, because parents are dealing with an unfamiliar situation, they require assurance first from the prosthetist.

“Parents often react to their child’s level of anxiety,” Gingras said. “Parents… desperately want to understand all there is to know and what they can expect from the care. Through education, the parents are reassured of realistic expectations regarding their child’s abilities, and in turn, this helps the parents to reassure their child.”

Ethan Wright with upper extremity specialist Steve Mandacina, CP
Ethan Wright with upper extremity specialist Steve Mandacina, CP.

Asking parents how they are doing is another strategy that can help instill confidence and build trust, Petersen said. Parents’ well-being often is overlooked as everyone focuses on the child, and acknowledging parents’ fears and concerns is important.

“I worked with a young guy who was involved in a traumatic injury, and I asked his mom, ‘How are you handling this? Is everything going OK?’” Petersen said. “She broke down and started crying. She was worried about all of these future issues: Is he going to be able to find someone who wants to date him? What kind of job is he going to be able to do? Is he going to be able to return to doing the kinds of things that he did before? It is important to address those kinds of questions with the parents.”

Prosthetists also need to stress to parents that as the child grows and changes, the child’s prosthetic needs will change. As the child reaches different developmental milestones, the type of prosthesis may change, and parents need to be aware this process is ongoing.

“There are going to be a lot of changes to the prostheses, and it is important to let the parents know that there will be a lot of changes,” Petersen said. “There will be a fair amount of visits to address those different changes and growth patterns.”

Parents also should be encouraged to become smart consumers. In addition, parents need to become a strong advocate for their child until the child can take over that advocate role, said Kevin Carroll, MS, CP, FAAOP, vice president of prosthetics for Hanger Prosthetics & Orthotics.

“The child’s body is going to change faster than an adult’s, and parents have to have a good understanding of what prosthetics is all about,” Carroll said. “Parents need to become smart consumers and be able to advocate for themselves and understand the importance of advocating for themselves with their insurance companies and with their schools.”

Foster peer support

Another way prosthetists can build a relationship with both parents and children is to help them get in contact with other children and families who have gone through a similar experience.

“I will try to hook them up with a peer, somebody who has gone through something similar. For somebody who is getting their limb amputated below the knee, I will try to find another child about the same age who had a similar type of amputation,” Carroll said. “You are not only hooking up the child but you are also hooking up the parents.”

Prior to placing families in contact with a support or peer family, though, Carroll noted they make certain the support family is prepared to start acting as a peer counselor. Carroll also tries to place families in contact with an adult who went through limb loss as a child.

“I also try to move out into the years with somebody who might be an adult or 20 years postoperative so they can see, well, here is a guy who lost his leg 20 years ago or a woman who lost her leg 20 years ago do the same thing that I did and she is still alive 20 years later or 40 years later,” Carroll said. “I really find that to work wonders, and you have a network of people out there that will counsel a family and talk to a family and become lifelong friends.”

Before connecting families, Petersen noted the family that is to serve as the peer support family first must fill out forms granting permission for their contact information to be released to comply with HIPAA privacy rules. If the peer family agrees, appointments can be scheduled to coincide so that the children and the parents of both families can interact.

Connor Karrow takes a spin in the parking lot Connor Karrow takes a spin in the parking lot
Connor Karrow takes a spin in the parking lot. Making clinic visits fun is an important part of establishing trust.

“I have noticed that there is always this immediate bond between patients. They can see that ‘you know what I have gone through’ kind of thing, and any time you have a chance to help build a support network with the family and the child, it is going to be good,” Petersen said. “They can converse and figure out what has been helpful for them and the kind of things that were important to them as they were going through the process.”

At the Shriners Hospitals, the clinical setting permits interaction between families that are going through similar experiences, Slider said. Often, the families are in different stages of treatment, and families further along in the process can serve as support.

“Fortunately, we are in a clinic situation when we are meeting new families, so there are other families here and they get to talk to the other parents,” Slider said. “It just gives them more peace of mind because they can talk to a family that has gone through the same thing that they are going through.”

Identify support groups

Another way prosthetists can forge a bond with parents is to identify support groups and organizations that offer resources for children with limb loss such as the Amputee Coalition of America (ACA) and the Association of Children’s Prosthetic-Orthotic Clinics (ACPOC). In addition, Petersen noted there are local support groups that parents and families can join to meet others with similar experiences.

For children who are interested in sports, Carroll recommends they get involved with the Challenged Athletes Foundation (CAF).

“The Challenged Athletes Foundation takes these kids under its wing and encourages sports and recreation activities for the kids,” Carroll said. “I notice every year that the attendance at the CAF triathlon has grown. The number of kids and their families who turn up at that is just amazing, and that is a great opportunity for families to interact with one another.”

Slider also noted there are many support groups to help a young amputee to become active again, adding “we try to get them in touch with all types of support groups for playing sports and different activities so that they can get back to an active lifestyle.”

Another good source of information and resources for families is the Internet, Carroll said. Many support Web sites can provide opportunities for families throughout the United States to talk online with each other.

“I will recommend that they visit the ACA Web site and talk to parents, along with joining the organization because they get some great information from that group,” Carroll said.

Use a team approach

Gabriella Clabes shows off her prosthesis
Gabriella Clabes shows off her prosthesis. A colorfully designed prosthesis may help children view their limb loss more positively.

Using a multidisciplinary team approach also serves to strengthen trust and a build a relationship with parents and children. Physical and psychosocial issues as well as any concerns can be discussed in a group setting.

“The patients can express their issues or the parents can express their issues, and then as a team we can tackle those different issues and try to resolve anything or improve whatever we need to work on to make the whole rehab process more successful,” Petersen said. “If you have more than one set of eyes looking at something, the outcome is going to be better. I am involved with a comprehensive rehab program in Denver, and the results are pretty good because you have a lot of different people looking at the same thing. Someone may miss something that somebody else may see, and the team can address those issues.”

The multidisciplinary team usually includes an orthopedic surgeon, pediatrician or a physiatrist as well as an occupational therapist, a physical therapist, a prosthetist, an orthotist if needed, specialty nurses, a care coordinator and a social worker. At the Tampa Shriners Hospital, the team also can include a child life specialist who is an expert in child development, Gingras said.

“We have three child life specialists who, through medical play and other strategies, work exclusively to educate patients prior to surgeries or other care in the hospital,” Gingras said. “They work with the children and the parents so that the children understand what the care is about, not just the parents, and they do it at each child’s developmental, age-appropriate level.”

The child life specialists also can be called in when a child becomes particularly upset or distressed, Gingras said. They then will use distraction strategies and work with the parents and medical staff to help the child get beyond the episode.

Gingras noted parents also are reassured because the Shriners Hospital and clinic both employ various rehabilitation specialists during their child’s clinic visit and also throughout the development of the patient care plan. A child may receive several coordinated services from various departments, all working together to meet established patient goals.

Have fun with patients

Another important strategy to build trust is to have fun with patients. By making visits as fun as possible, it is easier to bond with the child, and the overall outcome for both the parents and the child is going to be better, Petersen said.

“I fit a little girl who started reaching some developmental milestones where she needed a terminal device that gripped and held things, and a fun activity that we ended up doing was placing bubbles in the prosthesis and letting her use her sound hand to manipulate the bubbles and blow the bubbles,” Petersen said. “It was a fun activity for the child to start to see that this prosthesis could help provide some function, and it was fun that her mother saw her having fun using the prosthesis as well.”

Carroll noted he jokes with the children and often acts silly. He also goes into a visit with a lot of energy.

“The kids do not want to go into a clinical type situation where everything is serious,” Carroll said. “They want to come in and laugh and have fun, and when you create that kind of an environment, you can only expect success.”

Finally, prosthetists need to remember most children with limb loss just want to be like other children.

“They just want to be kids and they want to be like everybody else, and whatever it takes to make them do whatever everybody else can do, then that is what they want to do,” said Slider.

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Mary L. Jerrell, ELS, is a correspondent for O&P Business News.

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