PARK CITY, Utah — The occurrence of persons born
with congenital limb deficiencies is approximately 25.64 per 100,000 live
births. Of those congenital births, approximately 60% are
upper extremity limb deficiencies. Although there is
literature debating whether children with upper extremity limb loss should be
fitted with a prosthesis, there is a lack of literature that follows up with
adults with congenital upper extremity limb loss and examines why they
continued to wear their prosthesis into adulthood, according to Vivian J. Yip,
OTD, MA, OTR/L, Shriners Hospital for Children, Los Angeles. She presented the
findings of her qualitative study into this topic at the
2011 Association of Children’s Prosthetics-Orthotics Clinics
Annual Meeting, here.
“I have met many families with children who have
unilateral congenital below-elbow deficiency (UCBED) and I wanted to explore
the growing up process and what happens when they grow up to be adults,”
Yip said.
Qualitative methods would complement the research that
had already existed, according to Yip. She believed those methods would allow
for the voice of the person wearing the prosthesis to be heard.
“We interviewed three adults with UCBED and
currently wore a prosthesis,” Yip said. “I chose adults so they could
reflect on their childhood experiences. I was curious to see what experiences
these individuals encountered and how it influenced the three adults to
continue wearing their prosthesis.”
Data was generated through three 1- to 2-hour
semi-structured interviews that were convenient and comfortable for the
participating adults. The first interview was conducted to build rapport and to
obtain the person’s background. The first interview included preliminary
discussions on the person’s childhood and the use of his or her
prosthesis. The second interview involved shared baby albums and photos to
assist with story-telling. This discussion progressed to growing up with UCBED
and their feelings about significant incidences in their childhood. Questions
regarding participants’ current social and home life were also asked. The
third interview involved follow-up questions to provide any additional
information.
Through data analysis of the conducted interviews,
meaningful information was coded and compiled into common themes. After further
review of the data, the themes were condensed and categorized into five
specific themes. They were:
- growing up;
- growing up is hard to do;
- growing up as an adult;
- growing up wearing a prosthesis; and
- if I had to grow up all over again.
“One thing that was common among the three when
asked about negative stories is that they all brought up teasing,” Yip
said. “Two of the patients told their stories non-chalantly, while the
other participant was more emotional. All three reported talking about the
incidences with their parents.”
One of the participants recalled seeing an older boy
with a prosthesis ride a motorcycle. The participant talked with the boy later
that day and reported this memory as a positive experience, according to Yip.
All three participants reported stares as a child and an adult and discussed
the ways in which they coped. The two female participants recalled adapting
their clothing and the way they presented themselves, such as keeping their
hair a certain length so a harness or strap would not be exposed.
“It was not an easy topic when asked why they wear
a prosthesis,” Yip said. “There answers appeared to have a utility
aspect as well as an image perception part to their answers and they were often
intertwined. All three reported needing their prostheses at work.”
Yip explained that the theme of utility and image
perception for adults who wear their prosthesis could be further explored.
“The explanations for wearing their prosthesis were complex,”
she said. “it was difficult to decipher between utility and image
perception and identity and sometimes it seemed as though it should not be
separated. There is definitely room for this to be further analyzed. These are
only preliminary findings and more examination will provide more insight into
the phenomenon of wearing a prosthesis.” — by Anthony
Calabro
One of the biggest influences on whether someone is a
lifelong prosthesis wearer is the encouragement provided by the child’s
parents at a young age to establish a wearing pattern. We have found that the
people who continue to wear and use a prosthesis as adults are those who were
encouraged to wear one consistently when they were young children. We have
noticed trends over time in that some of the kids who start out using a
myoelectric prosthesis at a young age may go through stages where they either
wear nothing for a few years or wear a passive arm for a period of time and
then they return to using a myoelectric limb when they are entering the
workforce.
The other factor that may make the experiences of
Canadian children different, is the support provided by the War Amps of Canada.
This organization offers resources for children and families in coping with
many of the issues mentioned in Vivian’s study including teasing and
bullying.
— Wendy Hill, BScOT
Research occupational
therapist, University of New Brunswick Institute of Biomedical Engineering
As prosthetic technologies continue to advance and offer
additional functionality, with fewer limitations and disadvantages (such as
comfort issues and lack of input control) the benefit of using the prosthesis
are realized. We will likely continue to see persons with limb loss or limb
deficiency not only accept and use prosthetics more with these advancements,
but rely on them more as well.
We are in the beginning of a great shift taking place in
our field — a time of significant leaps forward in technology and
integrated designs. While many advancements have been taking place over this
past decade, I believe we are just at the brink of having a new and greater
surge of technology take place. Not only does this directly impact immediate
life with a prosthetic device, but also stands to give a very different
experience for those growing up with prosthetic devices since childhood.
The public perception of prostheses today is very
different from where it was a few decades ago, so the experience of growing up
and the reasons for using prosthetic devices will not be the same going forward
as they were in the past.
— Jay Martin, CP, LP, FAAOP
Director,
Advanced Systems Group, Orthocare Innovations
