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Special Topics - OTS 294
The Role of Assistive Technology in meeting Activities of Daily Livingof Adolescents with Upper limb Dysfunction arising from Failures of
formation
by Pamela Williams
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Introduction
Upper limb congenital malformations are pretty rare but can result in severe limitation or
loss of function in all areas of occupation because the use of arms and hands are essential for
the performance of many activities. Children with impairment and disability, arising from upper
limb dysfunction may require the provision of aids, equipment and other accommodations which
can help them to successfully adapt and respond to meeting the demands of differing
environmental contexts which they are going to encounter as they develop and grow to maturity.
Assistive technology can be a valid means of helping to develop skills or maintain skills and can
facilitate greater levels of independence.
However, there appears to be little written about the lived experience of children with
congenital upper limb dysfunction and their utilization of assistive technology for meeting self-
care/personal activities of daily living. A key area of focus of this paper is to explore how
assistive technology is used by adolescents with congenital upper limb dysfunction, when they
are at an age where the desire for increasing autonomy, awareness of body image/self-identity
and need to assert their independence away from with primary caregivers are likely to emerge as
important factors during this transitional period. Questions being addressed include, Do
adolescents with upper limb dysfunction have ease of access to the right types of aids which
enable them to competently manage essential self-care routines (eg personal grooming tasks
such as washing, drying and brushing hair and dressing activities), if so what routes are followed
for obtaining these aids/assistive technology and how readily available are they? Do the assistive
aids currently available make a real qualitative difference to both the main service user and their
care givers (if applicable) in respect of factors such as time, effort and organization required for
carrying out self-care tasks, or do alternative strategies/techniques and problem-solving bridge
the gap in the absence of assistive technology which could make a difference in these areas?
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What are the concerns of the primary caregivers (within families) in these situations and how are
issues of independence, during this period of transition for their child, managed?
Before these issues can be addressed, it is important to understand the pathogenesis of
congenital upper limb conditions and their course as these factors determine the extent to which
the functional anatomy and biomechanics of the upper limb are likely to be affected and greatly
influence future management and therapeutic interventions. Subsequently the next section of this
paper provides an overview of the literature on etiology and classification of congenital upper limb
deficiencies.
Etiology and Classification of Congenital Upper limb Deficiencies
Congenital anomalies are uncommon. They affect 1- 2 % of newborns. Of these
approximately 10% of children have upper extremity irregularities (Kozin, 2003). Normal fetal
development occurs in three stages (1) the pre-differentiation period (weeks 1 and 2), (2) the
embryonic period (weeks 3-8) and (3) the fetal period (weeks 9 term) (Van Heest, 1996). Eight
weeks after fertilization embryogenesis is complete and all limb structures - bones, ligaments,
joints and muscles are in place and undergoing rapid growth. The ongoing process of normal
skeletal ossification for the upper limb results in the formation of the long bones - clavicle,
humerus , radius and ulna the short bones - metacarpals, proximal, middle and distal
phalanges of the hand and flat bones the scapula and carpals. Primary centers of
ossification are present in all fetal long bones by week 12. Most congenital anomalies of the
upper extremity occur during the fetal phase of development (Kozin, 2003). Upper limb
deficiencies are defined as reduction defects of the humerus, radius, ulna, hand and phalanges.
(Ephraim et al, 2003).
Most frequently malformations of the hand and arm result from gene variation which give
rise to specific syndromes or with associated abnormalities of other organ systems, (Van Heest,
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1996). Additionally, exposure to environmental teratogens or indeed gene- environmental
interaction may result in limb deficiencies (Ephraim et al, 2003). However, the causes of some
upper limb anomalies are not always known.
Morrissey and Weinstein (2001) note that the classification of congenital limb anomalies
has not been clearcut and most orthopedic clinicians tend to use a combination of systems to
categorize and to precisely describe these deficiencies . However, a widely adopted system is
that which was proposed by C.H Frantz and R. ORahilly in 1961 and augmented by A.B
Swanson in 1976. (Froster-Iskenius & Baird, 1990). This is also now augmented by a system of
classification developed by the International Standards Organization (ISO) and the International
Society for Prosthetics and Orthotics (ISPO). (Morrissey & Weinstein, 2001). However for ease
of reference this paper will use the descriptive terminology applied under the Frantz and O
Rahilly system . This system places upper limb malformations within seven categories. These
are as follows:
1) Failure of formation of parts -
2) Failure of differentiation
3) Duplication
4 ) Overgrowth
5) Undergrowth
6) Congenital Constriction band syndrome
7) Generalized skeletal abnormalities
1. Failure of formation of Parts:
Failure of formation describes upper arms, forearms, wrists, hands or fingers that do not
form completely or at all.
Transverse deficiencies, i.e. those which extend across the entire width of the limb,
linclude all naturally occurring congenital amputations which can apply to the shoulder, arm,
forearm, carpals metacarpals and phalanges . The most common transverse deficiency is the
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unilateral below- elbow amputation. Van Heest (1996) notes that this generally lends itself well
to early fitting of a prosthesis . A child of between 6 12 months of age can be fitted with a
simple paddle prosthesis initially with more sophisticated prostheses being applied as the child
develops.
Longitudinal deficiencies cover the gamut of deformities ranging from phocomelia, where
the hand is attached to the trunk, to anomalies of the radius, ulnar and digits. Phocomelia is
uncommon and is usually associated with the drug thalidomide having been taken in the first
trimester of pregnancy. Surgery is not usually indicated in these cases and fitting of a prosthesis
can be difficult due to the extreme shortening of the limb. (Kozin, 2003). Deficiencies of the
radius most commonly result in partial to complete absence of this bone. The ulna in this
instance is often subject to growth retardation and bowing. The thumb can be absent in upto
85% of cases and remaining digits may be stiff. Hand function is reduced in these instances due
to associated loss of thumb and digit function as well as acute deviation at the wrist joint.
Bilateral incidence ranges from 40-60% in these cases. Unilateral deformities occur twice as
often on the right side as on the left and boys are affected more frequently than girls in a 3:2 ratio.
Radius deficiencies are commonly associated with named syndromes such as Holt- Oram
syndrome or Thrombocytopenia Absent Radius (TAR) syndrome. The complete absence of
skeletal parts of a limb is known as Amelia. (Froster-Iskenius & Baird, 1990)
2. Failure of Differentiation
Failure of differentiation, or separation, occurs when the basic unit is not fully formed.
Synostoses, (or the joining of two bones by the ossification of connecting tissues) of the radius
and ulna, carpus and metacarpals are examples of a lack of complete differentiation of parts in
the upper limb. Van Heest (1996) notes that Syndactyly, or fusion of two fingers, is the most
common congenital upper limb condition in the United States. Syndactyly can be successfully
treated via surgical intervention providing this conducted when the child is between 6-18 months
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of age in order to avid tethering of skeletal growth and to facilitate subsequent normal digital
development (Van Heest, 1996)
3. Duplication
Duplication, or polydactyly most commonly involves an extra thumb or little finger and
central polydactyly is rare ( Morrissey & Weinstein, 2001). Polydactlyly of the little finger, without
complications, can usually be successfully treated with excision during the newborn phase with
normal hand function being preserved but more complex polydactylies may necessitate excision
and reconstruction. Because of the functional importance of the thumb preaxial polydactyly
(thumb duplication) surgery is not usually effected within the first year of birth as excision can
easily disrupt thenar musculature and damage collateral ligaments. Central polydactyly will either
entail leaving the digits conjoined, or attempting reconstruction to a five digit hand. However,
even with reconstruction the involved digit may be subject to poor alignment and is likely to be
smaller, weaker and stiffer. (Morrissey and Weinstein, 2001)
4. Overgrowth
A section of the hand or arm may be too large or too small affecting joint structure and
function. However overgrowth deformities may affect the entire limb, forearm, hand, or digits.
Most commonly, macrodactyly - non-hereditary enlargement of a digit - will result in seventy
percent of children having an adjacent digit affected. (Van Heest, 1996)
5. Undergrowth
Van Heest (1996) states that undergrowth, or hypoplasia denotes complete formation of
a part during the embryonic period of gestation but incomplete growth during the fetal period.
The whole limb or any of its parts may be affected and can also occur with longitudinal anomalies
of adjacent parts. The thumb is most commonly affected and hypoplasia in this instance can
range from minor diminution with full function to total absence. Hand surgeon consultation is
necessary to determine gradation of involvement and most appropriate procedures.
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6. Congenital Constriction band syndrome
This results from tight bands of tissue around the arm, forearm, wrist or fingers. It can
range from being mild to severe. If severe, part of the hand may be lost with amputation arising
distal to the constricting band. Surgical interventions are recommended for all types of banding
except those which present as amputations. (Morrissey & Weinstein, 2001). If a secondary and
severe deformity is present such as gross distal lymphedema then interventions may occur when
a child is still neonate otherwise surgical interventions within first 18 months is appropriate. (Van
Heest, 1996)
7. Generalized skeletal abnormalities
This category covers a spectrum of malformations but includes congenital dislocations
such as those occurring at the elbow. These may arise, for example from ulnar abnormalities and
limitations in motion and reduced function of the forearm will result ( Morrisey & Weinstein,
2001). In this instance the shoulder, wrist,or trunk need to be used to compensate and facilitate
recreational activities and activities of daily living. This presentation is very uncommon and may
not always be remedied by surgical interventions although elbow reconstruction might be feasible
in some case.
Abnormalities which involve limited proximal and distal radial physeal growth result in
wrist deviation and bowing of the ulna . (Morrisey & Weinstein, 2001). Additionally with radial
skeletal malformations there may be paralleled soft tissue deficiencies on the preaxial side of the
hand, wrist and forearm and wrist extensors, pronator-flexor muscles, radial nerve and radial
artery may all be severely affected. Children with longitudinal deficiencies of the radius may
need to compensate for the absence of opposition by using spherical grip and lateral pinch and
application of adaptive techniques for managing hygiene, feeding, and dressing are often
necessary.
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The congenital abnormalities previously described highlight how performance in key
activities of daily living are likely to be impaired from such malformations and the long-term
effects of these pervasive conditions. However, surgical, medical and therapeutic interventions
can potentially and substantially lessen deformity and improve function. Although failure of
formation anomalies appear least common they are probably the most likely to have most impact
on upper limb and hand function and are subsequently the main focus of this paper.
Global Incidence of Upper Limb Deficiencies
Morrissy & Weinstein (2001) note that in general there is little information on the
incidence of congenital limb deficiencies. However, Giele et al (2001) in an eleven year
population study of Western Australia found the prevalence of babies born with upper anomalies
was 1 in 506. 46% of these had another nonhand congenital anomaly, 51% had bilateral hand
anomalies, and 17% had multiple different hand anomalies. The most frequently occurring
irregularities resulted from failures of differentiation (35%) duplications (33%), and failures of
formation (15%). Upper limb anomalies were more frequent for boys, preterm and post-term
births, multiple births and older mothers. No significant differences were found for ethnic groups,
left and right sides or in babies who survived birth or those who died shortly after birth.
Current and accurate data regarding the global incidence for all congenital disorders
which affect the upper limb is difficult to gain. In the developed world national registries are
maintained which provide statistics pertaining to incidence and epidemiology and focus in the
literature in this field highlights concerns about management of surgical amputations arising
from diseases such as diabetes and cancer or traumatic injury and implications for subsequent
rehabilitation. (Ephraim et al, 2003). However, trying to find information pertaining to incidence
of congenital malformations in the developing world is more difficult. Little could be found by way
of statistical data for these populations and they do not appear to be well represented in research
literature. There may be a number of reasons for this. Historically all types of birth defects have
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been considered by multiple cultures to be stigmatizing or to be punishments for misdeeds and
sins and a visitation of evil upon the child and family (Brent, 2004). In cultures where such belief
systems still persist children with these birth defects are less likely to come to the attention of
health and medical authorities/organizations who are a main source for keeping records.
Additionally, where resources are scarce there may not be the commitment or infrastructure to
support collection of data for these relatively rare conditions. True incidence of upper limb
congenital malformations may also not be known due to non- recording of stillbirths or pre-natal
detections of such deformities which may result in terminations.
Brief Overview of the Functional anatomy of the Upper Extremity
The upper limb is a remarkable and complex example of natural biomechanical
engineering. A fully developed and unimpaired arm is comprised of multiple structures which
allow smooth, efficient movements to occur. Hand motions are made more effective through
proper positioning via the elbow, shoulder joint and shoulder girdle. Greatly simplified, the upper
limb comprises of the shoulder girdle complex, the shoulder joint, the three long bones of the
humerus, radius and ulnar , elbow and radioulnar joint, wrist and hand. The hand itself consists
of 27 bones, 30 joints and 33 muscles and is innervated from three peripheral nerves. (Stanley &
Tribuzi, 1992).
The upper extremity is connected to the trunk via the sternum and skeletal attachment
occurs at the sternoclavicular joint. (McMinn et al, 1993). However, most arm movements are
facilitated by the combined actions of the three joints of the shoulder which consist of the
sternoclavicular joint, the acromioclavicular and glenohumeral joint which is a lax, multi-axial ball
and socket joint. It is supported by a network of muscles, ligaments and soft tissue and is one of
the most mobile joints of the body. (Hamill & Knutzen, 1995). The sternoclavicular joint in
isolation has little stability but acts as an axis for rotation of the shoulder girdle and absorbs
lateral shock. (Jacobs, 1999). The acromioclavicular joint facilitates elevation and depression of
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the scapula. (Hamill & Knutzen, 1995). The range of motion at the shoulder joint is extensive. It
allows the arm to be moved through approx 180 degrees of flexion or abduction, 60 degrees of
hyperextension, 75 degrees of hyper-adduction, 90 degrees of internal and external rotation, 135
degrees of horizontal flexion and 45 degrees of horizontal extension. (Hamill & Knutzen,1995).
The elbow joint is comprised of the distal end of the humerus, the proximal end of the
ulna and the proximal end of the radius. whilst the radioulnar joint consists of proximal, distal and
middle joints stabilized by ligaments.
The wrist joint is made up of the distal ends of the radius and ulna and two rows of carpal
bones and its movements are flexion, extension, radial deviation and ulnar deviation. (Jacobs,
1995).
The combination of shoulder and elbow/radioulnar joint movements, in concert with the
hand, enables us to effect a myriad of movements essential for participation in occupations that
require prehension, that is to say the use of the hand and fingers to grasp or pick up objects.
(Anderson et al, 2002). Without this capability actions required for dexterously and precisely
manipulating tools and utensils, catching a ball or fine motor tasks such as rolling a bead between
the fingers are not possible. The wrist and hand are capable of precision and power because of
multiple joints being controlled by a large number of muscles which originate in the forearm and
enter the hand as tendons. Additionally the hand communicates a wealth of sensory information
and feedback and deficits to the hand can result in loss of tactile discrimination and absence of
capability for discerning the nature of objects by the sense of touch.
The Challenges of Upper limb Deficiency and the Facilitation of Occupational Adaptation
Due to the rarity of congenital upper limb deficiencies many clinicians and healthcare
professionals may have limited or no experience of these conditions. However it is important that
patients are able to access organized programs where knowledge and experience is available.
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The management of pediatric limb deficiency is a specialized and complex area of clinical
practice. A multi-disciplinary team approach to these patients and families requires effective
communication and ideally teams working with this type of presentation should be comprised of a
physician, surgeon, prosthetist, physical therapist, occupational therapist, social worker or child
psychologist who have knowledge of normal child development and are aware of the deviations
from the norm which will occur as the child develops. With upper extremity deficient children
there are many factors which come into play for influencing interventions. Therefore, assessment
and treatment planning need to focus on function, growth, cosmetic deformity and the concerns of
the family and child if successful outcomes are to be achieved. (Morrissey & Weinstein, 2001;
Meier & Atkins, 2004).
Function
Interventions aimed at improving function for congenital upper limb or hand problems
should address the ability to place the limb and hand in space, deficiencies in grasp, release, or
pinch capabilities and improvement or maintenance of skin sensibility and mobility, and giving
consideration to the degree to which physeal abnormalities are likely to affect musculoskeletal
deformity both short-term and long-term. In some cases non-operative care may be indicated
whilst in others reconstructive surgery or amputation may be advised as a means of optimizing
function but much will depend on the condition being presented and the associated
complications. (Waters, 2001).
If a decision is made to fit a child born with congenital upper limb absence with an initial
passive prosthesis, subsequent to amputation, then this can be made as early as when the infant
is three months old . This is the age at which they begin to sit up and start to use their hands
together for gripping activities and is also when the device can start to begin to become
incorporated as part of their body image by parents thereby increasing the likelihood of their
acceptance of the prosthetic.(Stark, 2001) However, before proceeding with the construction of
any prosthesis there will always need to be a full evaluation and examination of the limb to
determine current shape, extent of any scarring and bony areas which are likely to affect design,
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comfort and flush fit. Children are potentially likely to have a series of prosthetic fittings as they
grow and as their needs change. If a child retains a prosthesis it is likely to be activated when
they are about 18 months of age for below elbow amputee and about 3 years of age for an above
elbow amputee. As a child grows greater considerations need to be given for balancing function
with cosmetic concerns. It is at subsequent evaluations that advantages and disadvantages
about component parts are likely to be discussed with both the child and parents. Outcomes of
these discussions will determine the composition of terminal devices, wrist, elbow, hinges, control
mechanisms, harnessing and socket fitting. Assessments of range of motion and muscle
strength will be recorded to determine how best to make the socket so that it causes least
restriction of movement and facilitation of prehension with a terminal device should be a primary
objective. (Stark, 2001)
Growth
A childs physical and emotional status constantly changes as he or she develops.
Consequently the rehabilitation approach must be responsive to these maturational changes with
regards to congenital upper limb deficiencies because developmental milestones are used as a
guide when prescribing prosthetic devices. (Jain, 1996; DiCowden 1990). In the first year of life
a child is physically developing strength proximo-distally and is learning to co-ordinate
movements of trunk, and head with gross motor functioning of the limbs. For transradial
unilateral and transverse forearm anomalies, Initial fitting of a light-weight supracondylar
prosthesis, with a self-suspending socket, may be effected from 3 9 months of age to assist in
gross motor development tasks, such as creeping and pulling to standing for example. At two
years of age a child is attuned to processing information through the five senses, is able to
ambulate and is beginning to develop manual dexterity. If initial fitting is made at this stage
however, there may be a rejection of the prosthesis because the child is already starting to
develop compensatory techniques by using their feet or trunk but these may be counter-
productive to the development of normal movement patterns if left unchecked (Jain, 1996).
Children with bilateral deficiencies also require early fitting but may not always benefit more from
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bilateral prostheses unless they can be an adjunct to improving sitting and standing balance and
the weight and complexity of hardware can be a major source of frustration for a child.
Unilateral fitting in these instances may still be advisable with this being applied to the side where
the child has developed a leading foot pattern (if this is known). However, children between 2- 6
years of age can usually be fitted with a myoelectric or body-powered prosthetic with a terminal
device providing that they do not have other cognitive and developmental limitations which might
interfere with understanding 2-step commands, attention span or the ability to relate to
bimanual prehension activities. The ability to use a prosthesis competently by age 2 is
significant because at this stage of development the child is asserting some degree of self-
sufficiency. Effort is concentrated in self-feeding, independent toileting, obtaining objects in the
environment unassisted and gaining self-control over the body. This process can be delayed if
the child is necessarily having to remain dependent on a caregiver for these seminal tasks and
they may be significantly below their age level in relation to motor skill development an
subsequent intellectual growth (DiCowden, 1990).
Children with an amputation at the elbow level can generally be fitted with a lock and unlock
elbow cable operated or switch control prosthetic, which acts as an assisting limb, at between 35
-48 months if they can demonstrate understanding of the relationship between objects and the
immediate environment but the Utah Myolectric elbow is not suitable for children under 14 (Jain,
1996). At around 3 4 years of age children are going to become more aware of their limb
deficiency and of the visible difference between themselves and other children but will not yet
have capacity for building their own coping strategies. (Tonnacour and Shorgan, 2004) . This
can be a difficult phase as the child may display social discomfort just as they are about to
commence school.
From six through to puberty children continue to develop co-ordination and social skills
which may be demonstrated in involvement with scholastic endeavors, sports and other extra-
curricular activities. This is the stage of development where Piagets concept of concrete
operations is formalized by the individual being able to make connections between concrete
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relationships. For instance they more readily understand mathematical quantities and proportions
and can relate to basic scientific principles. Additionally, according to Eriksons theory of lifespan
development feedback from peers , as well as adults, begins to have significance at this age
and the child can achieve sense of competency with attaining age appropriate tasks or can have
feelings of inferiority if they are not able to develop skills and to be recognized.
DiCowden (1990) highlights that rehabilitation needs to actively take account of the needs of
the child with congenital deficits or chronic at each particular age stage because disability can
have dramatic developmental impact upon the child. Dicowden (1990) also advocates for
multidisciplinary rehabilitation services being set up which assess and treat children all the way
from infancy to late adolescence and which provide comprehensive evaluations taking into full
consideration intellectual and psychosocial functioning in addition to physical and medical factors.
The use of prescribed prosthetics, or other assistive technology is therefore subject to the
childs different stages of development which will inherently bring them changing needs and
challenges. Certainly, as children with congenital deficits reach adolescence they may need to
deal with a number of psychosocial issues around independence, self-identity and body-image
and these are discussed in a later section of this paper.
Cosmetic Deformity
Upper limb anomalies are a very apparent visible difference. As such individuals can be
subject to stigma and negative perceptions associated with disfigurement with subsequent
consequences of poor body image and loss of confidence. Depending on the nature and extent
of the anomaly, some deformity may possibly be diminished through surgical interventions either
through amputation or reconstruction. However, all children will gradually become aware of how
socially orientated society is and by the time of adolescence most children do not want to be seen
as different from their peers. However, children with this pronounced type of upper limb
impairment need to come to terms with their difference whilst also being expected to be become
more independent. Therefore challenges exist for rehabilitation teams to be able to provide
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prosthetic devices which when in use are not only functional but also look aesthetic and lifelike.
Additionally, any other assistive devices or technology used also has a requirement to be age
appropriate and appealing for this group.
FamilyConcerns
The parents of an infant born with congenital upper limb dysfunction are likely to initially
experience a sense of grief and guilt, in addition to lacking information about the nature of the
cause and likely progression of their childs condition and how this will influence future
development. Therefore, it is imperative that they have access to guidance from professionals
who can provide education and advice which will enable them to make informed decisions about
their child at each stage of growth. These decisions will have lifelong consequences for the child
as they have a condition which they will need to adapt to and accommodate rather than having an
illness that has an end point or a cure. In some circumstances functional use of a childs upper
limb may be enhanced by amputation but this may be a difficult recommendation for parents to
accept. DiCowden(1990) states that the family is the most important mediator of a childs
development, and subsequently if parents remain grieved by their childs difficulties they cannot
give the necessary feedback and guidance required for rehabilitation.
Parents may benefit from counseling, psychotherapy and referral to support groups where
they can be introduced to families who have gone through similar experiences. This can help
allay fears and anxieties about the future, begin to give resolution to feelings of loss and
disappointment whilst leading them to a point of acceptance and realistic hope that their child can
reach their full potential. (Morrissy, Giavedoni, & Coulter O Berry ,2001) .
Although initially born dependent, normally developing children, gradually move to greater
independence and are capable of demonstrating considerable physical and psychological
adaptability. Loss of upper limb function can greatly impact on all areas of occupational
performance but children born with congenital disabilities affecting this extremity can also thrive if
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they are provided with the right resources, assistive devices, technology and accommodations.
The utilization of adapted performance techniques can also enable them to acquire skills and
strategies for developing competence and mastering the environmental contexts in which they
are placed. However, if a child does not have access to the appropriate remediations reduced
opportunities for developing skills and autonomy is likely to result in diminished sense of personal
causation, self-efficacy and self-esteem (Stoller, 1998).
Children with a unilateral upper limb congenital deficiency are likely to cope well in most
situations without a prosthesis or other assistive devices. They can learn to use their intact hand
for most activities whilst often using their deficient, or shorter arm for steadying. Anomalous
limbs are often still functional but orthoses and limb reconstruction are options for maximizing
function. However, sometimes amputation maybe indicated but the goal should be to create the
most functional limb possible which allows the individual to gain most life-satisfaction. (Carroll &
Edelstein, 2006)
Celikyol (1984) notes that problem-solving and the pursuit of sometimes unorthodox
solutions are crucial strategies for effectively interacting with the environment and for facilitating
the management and performance of activities of daily living when prosthetic aids may not
always be wanted or feasible. Individuals with bilateral upper-limb absence, as in the case of
phocomelia, may prefer to use their feet as arm substitutes for functional activities rather than
cope with prostheses.
The Thalidomide Society has highlighted some of the difficulties which can be experienced
as a result of congenital bilateral upper limb loss. Many of these individuals have become adept
at using their feet and toes as substitutes for arms and legs but are now finding that over-use of
their lower limbs are resulting in knee and hip problems arising from joint degeneration which is
affecting their ability to manage some tasks. Many thalidomide impaired people report that the
length of time take for personal tasks such as washing and drying hair and dressing may take
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four times longer than for anyone else. Even slight Injury (such as a stiff shoulder) can often
result in not being able to carry out personal care activities until the injury has healed. Meal
preparation can also be difficult and dangerous. For instance the cutting of vegetables, and the
carrying of hot dishes, or lifting and moving of pans is often done in close proximity to the body
because of reduced arm length and the lack of thumb and fingers means reduced grip and
strength. Where hands are articulated at the shoulder it may not be possible to carry items at all.
Additionally medication bottles or blister packs may be difficult to open because of a lack of a
thumb or fingers. Also the lack of the fine pincer grip movements makes the picking up of small
items such as coins and pills difficult to achieve.
However, perhaps one the greatest challenges for children with this type of presentation as
they grow older is learning to accept themselves as they are irrespective of the physical
difference created by the upper limb deficiency.
Psychosocial Issues and Adolescents with Congenital Upper Limb Dysfunction.
The formation of a coherent personal identity is, in accordance with theories of
psychosocial development, a primary task of adolescence. The model of life span development
as posited by Erikson (1963) considers that during this period of transition failure to reach this
goal may result in confusion relating to sexual identity, choice of employment and other roles
performed as an adult. This stage of life may also be characterized by turmoil and stress as
adolescents experience the physical changes of puberty, and increasing expectations from
society at large as well as from family and peers as to how they should behave. The process of
puberty often carries with it concerns and anxieties over physical appearance and body image
and a desire to fit in with peers whilst also striving for a sense of ones own uniqueness and
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forging adult relationships away from parents and the family. Over the past thirty years there
has been a large amount of research interest in adolescent development. However this is in
relation to the general population. Chamberlain and Kent (2005) state that this process maybe
all the more challenging when childhood is marred by congenital or acquired disability. Rumsey
and Harcourt (2004) also note that transitional periods including changing schools, jobs or
neighbourhood can be particularly challenging for those with a physical difference because they
need to develop new strategies for dealing with the reactions of unfamiliar people and for forming
new relationships which go beyond initial encounters. Children with disability may experience
less exposure to everyday events and therefore have fewer opportunities to learn and explore in
the same ways as their age-related peers. Hostler et al (1989) affirm that the literature
concerning psychosocial outcomes for children with disabilities points to themes of poor social
adjustment, a sense of isolation and loneliness, fewer same-sex and opposite sex friends of
similar age, increased dependence on others, less assumption of responsibility and less than
average knowledge of sex.
Adamson (2003) however, notes that overall, research literature regarding the
psychosocial development, and personal experiences of adolescents with physical disabilities, is
sparse and this appears to be particularly apt for individuals with congenital upper limb
dysfunction. Adamson also highlights that there needs to be further exploration of the ways in
which young persons with disabilities perceive and evaluate themselves.
Van Dortsten (2004) also reports that current reviews of the literature fail to identify
particular recommendations or innovations for guiding and integrating psychological, medical
evaluation and treatment approaches for limb loss. However, young children are not initially
intellectually aware of physical differences. In fact it is most likely the parents who will have
difficulty adjusting to their childs disability. Initial reactions are likely to be those of shock,
anxiety, guilt and fear for the future, and there maybe some difficulty with the initial bonding
process (Rumsey and Harcout, 2004) . Parents may be concerned about the reactions of other
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people and how this will affect childs feelings and level of self-acceptance as they develop.
(Carroll & Edelstein, 2006). Families can vary considerably in their strategies for coping with a
child with a physical difference. These may range from open discussion , denial of its existence
or over-protection. (Rumsey and Harcourt, 2004). Parental concerns, however, may in turn be
transmitted to the child and assimilated with subsequent consequences for the childs own
perceptions of emerging body image and feeling of self-worth (Rumsey and Harcourt, 2004).
The child themselves may at some stage indeed begin to experience some degree of self-
consciousness as they progress towards puberty and may also be more vulnerable to teasing
and bullying from peers. It is at this time that some children may try to hide their deficiency,
particularly if they feel the effects of social stigma, even though may they have accepted the
appearance of the arm/hand previously. There may, for the first time, be signs of resentment and
a feeling of injustice about their disability. Again, however, there is little in the academic
literature which highlights how adolescents with this presentation deal with issues of body image
at this stage of the life span. Van Dorsten (2004) notes that no data exists to clarify whether body
image issues are greater for individuals with congenital limb loss, or for persons with acquired
limb loss arising from traumatic accident or vascular disease.
Parental support at times of transition in a childs life is always important but it is likely to
be crucial for the child who may have experienced various limb fittings (if prostheses are
involved) surgical procedures and other therapeutic interventions, which call for them to develop
adaptive coping styles. Biddiss et al (2007) highlight that strong social support networks
consisting of parents, teachers, friends and classmates have a positive impact on the
psychosocial health of children with disability. In fact peer acceptance of individuals with upper
limb loss generally appears to be good for children and adults alike. In terms of personal
adjustment and adaptation children with congenital limb loss have a higher level of social
adjustment in contrast to adults with acquired upper extremity deficiencies. This may be
attributed to the fact that persons with a congenital condition have a lifetime of incorporating their
disability into their identity. Persons born with disabilities begin to shape meanings ascribed to
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assistive technology early on and are more likely to consider it to be a means for facilitating
performance of tasks which they might not otherwise be able to undertake. (Louise - Bender
Pape et al, 2002). Those individuals with an acquired impairment, or amputation which has
arisen from sudden trauma or a state of acute, or even progressive disease are likely to have to
make more significant and critical changes in lifestyle, employment and social roles. In such
instances the use of assistive aids and prostheses maybe viewed as an inadequate substitute
and may not compensate for the loss of function of the limb and serve as a negative reminder of
this for the individual. However there is evidence which suggests that upto 19% of adolescents
with upper limb deficiencies are likely to reject prostheses and aids.
There are a possible range of reasons for this. Postema et al (1999) and Biddess et al
(2007) note that there is a shift in functional needs, from motor skills necessary for play and
exploration, to cognitive skills at this stage of development which exact less extensive use of the
hand, but more importantly if parents have negative expectations of their childs prosthesis then
the likelihood of it being rejected is higher in this instance. Biddiss et al (2007) also note that for
older pediatric users cosmesis has higher priority as a design feature than functional utility.
Secondly, adolescents may negatively reassess the role of their prosthesis as they form a more
autonomous identity. This is also a time when image counts for dating and appearance is tied in
with self-worth. De Tonnacour and Shorgan (20004) note that grief for the absence of a perfect,
symmetrical body can be intensely felt at this stage and can become an important element adding
to the normal crisis of adolescence. Subsequently adolescents with a visible difference or
disfigurement may be more susceptible to lowered sense of self worth which may turn to
depression. (Rumsy and Harcourt, 2004). Louise- Bender Pape et al (2002) emphasize that the
extent to which assistive technology and other devices are perceived as acceptable and helpful
tools depends on the individuals point in the life cycle, their place and role within the family,
cultural heritage and the social consequences of assistive technology use. Bad fitting
experiences which have resulted in pain may also contribute to non-use of a prosthesis. (Carroll
& Edelstein, 2006).
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Factors Affecting use of Assistive Technology Devices for the Upper Limb, with Specifc
Reference to Prostheses
Stoller (1998), states that in relation to human occupation assistive devices can be influential
in a number of ways. Firstly, assistive devices and technology can facilitate the undertaking of
tasks which may previously not have been possible. Furthermore, assistive devices can
remediate or compensate for deficits in developmental skills with results of the individual being
better able to organize existing skills into occupational behaviors which meet with societys
expectations and the external demands of the environment. Additionally, assistive devices can
significantly reduce the amount of time and effort expended in undertaking tasks which adds to
efficiency and performance competence. However, assistive technology is not without its
limitations and it is important for both the users and providers of assistive technology to have
realistic expectations of what can be achieved. Although assistive technology can be a powerful
remediation tool it may not always be feasible to apply it for effecting full restoration of lost
functional capabilities. This is pertinent in relation to loss of function with the upper limb.
Given the complexities and intricacies of the anatomical structures and physiology of the
upper limb it is not possible to replicate all the movements of the natural hand and arm and any
mechanical replacement is a poor imitation. Society in general, appears to be better at
accommodating lowerlimb disability whereas there appear to be less environmental adaptations
eg lever-type faucet handles, for those with upper-limb deficiency. There is also the issue of
providing devices tailored to meeting the self-care needs of individuals with upper limb difficulties.
Manufacturers may be deterred from committing funds and resources for improving components,
materials, and investing in research for this relatively small but specialist market. (Carroll &
Edelstein, 2006) However, the most widely available assistive technology devices available for
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prescribed and accepted by individuals with a below elbow amputation. They have the
advantages of requiring less natural energy being expended by the recipient, and the need
for harnessing is reduced or eliminated but they are very costly. (Carroll & Edelstein,
2006). However, they have the benefit of appearing more life-like and yield more grip
strength when required for functional activities. (Herr et al. n.d)
A Terminal device (TD) is the part of a prosthesis which substitutes for the anatomic hand.
Many TDs are commercially manufactured and can easily be removed from or added to a
prosthesis with a rapid disconnect wrist unit. Additionally by placing a rubber washer or O-ring
on the threaded screw at the base of the TD, a user can gain better control over incremental
rotation of the hand and this of benefit in sports such as baseball, basketball, or other recreational
activities such as photography or the playing of musical instruments. Some units also allow two
angles of wrist flexion to occur and this is benefit to anyone who cannot reach the midline of the
body. Furthermore, wrist flexion is particularly essential for helping with feeding, dressing, oral
and facial hygiene and toileting (Carroll & Edelstein, 2006).
Future TDs are likely to incorporate sensory feedback. Long-term goals of present research
in this area are to integrate prostheses directly into the bodys sensory nervous system and to
design TDs which can replicate multiple grasp patterns and wrist movements. Additionally,
electrodes may be implanted into muscle or attached directly and in conjunction with
microprocessor technology the user may be able to select pre-programmed series of movements.
For instance a person with a shoulder disarticulation could wear a prosthesis which is
programmed for facilitating eating. The hand would hold a fork, whilst the wrist rotates and the
elbow would flex to bring the food to the mouth with only one signal being required to trigger this
sequence of movements. (Carroll & Edelstein, 2006)
Brenner (2002) notes that electronic technology has made significant strides in the field of
prosthetics but has subsequently led to increasing complexity and a greater range of options
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Clinical funding is still a requirement to ensure that new or modified assistive technology
aids and advices -prosthetics or otherwise - can actually be properly tested, applied and
accessed by appropriate patient groups and evaluated for their efficacy as treatment techniques
and for meeting the individual needs of users.
Irrespective of these technological innovations, children as they develop, may opt to only
use a prosthesis only for certain specific sporting activities or social events. Indeed some of the
most popular adaptive and prosthetic designs have been developed by individuals who wanted to
find better ways of participating in their favorite sports and recreational activities. The choice of a
prosthetic aid depends on many factors which need to be assessed for by a clinical team.
Principally these are in the domains of concordance, comfort of the device, particularly in relation
to socket configuration, cosmesis and physiological and psychosocial factors of upper-limb
disability as these are very pertinent to the issue of rejection of a device which tends to occur
after one or two years of successful usage. Certainly an interesting and consistent finding in
relation to adolescent prosthesis wearers is that they do opt to abandon use of prostheses at this
stage of their life but there are few studies which have actively addressed the design priorities,
and personal factors influencing device usage, of the pediatric and population via qualitative
comments and reflective feedback (Biddiss, Beaton and Chau, 2007). More longitudinal
research studies and methodological approaches which more readily incorporate service user
opinion, for example focus groups could help bridge this limitation.
Whatever the perspective of the team or level of advancement in technology, it is the
childs wishes, where they are able to start expressing these, which should always be seen as
paramount. Patience, compliance and participation are often increased with greater
understanding but the best device in the world is of no use at all if a person does not engage with
it (Carroll and Edelstein, 2006). Higher levels of prosthesis acceptance may be anticipated
where the device is inexpensive to produce, lightweight and fit for purpose, biomechanically
sound, durable and easy to repair or replace and cosmetically acceptable. As expectations of
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technology grow, and patients become more informed of what might be available to them,
providers of assistive devices, whether this is a prosthetist or indeed an occupational therapist,
will need to stay abreast of new products and techniques.
The Role of the Occupational Therapist with Adolescents with Upper Limb Difference
In many respects the Occupational Therapist who works with adolescents with upper limb
will, at varying times assume the roles of educator, advocate and researcher on behalf of the
user. A key aim of intervention with this client group is to maximize function and autonomy,
whilst also enhancing quality of life via the appropriate access to, and utilization of, assistive
technology devices and aids. The therapist is likely to educate and train both parents and the
adolescent about the strategies, techniques and equipment which might enable greater
independence and efficiency of energy to be achieved regarding self-care activities such as
feeding, toileting, grooming and dressing whilst also bearing in mind the developmental and
physiological changes which may be occurring at particular times. (Celikyol,1984). Many
children with congenital upper limb differences have, by the time they reach adolescence, learnt
to use problem-solving strategies for carrying out essential activities of daily living and can be
remarkably adaptable in most situations but consideration needs to be given to personal care,
health, social, economic and leisure choices. This is particularly relevant for individuals who
experience bilateral upper limb loss (Stoeker, 2004).
Adolescent clients may prefer to adapt or modify how something can be accomplished
rather than use equipment because this may reduce feelings of dependency. Mutual problem-
solving which involves parents is keyas their attitudes, participation and interest shapes and
influences training programs and treatment interventions. In fact there is likely to be lesser need
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for specific interventions in many areas but the therapist may help adolescents and their families
deal with specific personal, social and vocational effects of upper limb disability and issues which
arise at times of transition. For instance these may include progression to high school, leaving
home for the first time which brings expectations of being more independent of family, and
obtaining employment.
It is essential for the therapist to work collaboratively and holistically with the adolescent. In
order to establish an occupational profile and design interventions which reflect their priorties and
life situation the therapist should aim to use age-appropriate assessment instruments for
gathering information, identifying the current strengths as well as potential problem areas.
Appropriate assessments include the Adolescent Role Assessment (ARA), The Occupational
Circumstances Assessment Interview Rating Scale (OCAIRS) and The School Setting
Interview (Henry, 2003). The ARA is a semi-structured interview procedure which covers areas
of childhood play, family and peer socialization, school functioning, occupational choice and
anticipated worker role as an adult. The OCAIRS focuses more specifically on occupational
participation and adaptation and addresses personal causation, values and goals, interests, roles,
habits, and skills. The SSI can be used to identifying any unmet needs for school environment
accommodations.
In the context of working with adolescents with upper limb difference the therapist also
needs to remain updated on the providers of assistive technology products, and to be aware of
resources, agencies/organizations and latest developments which the client might need to be
directed to in order to make informed choices about what is available and is going to best meet
needs. At times, there may be the necessity for a client to make use of both simple and
complex devices in order to meet functional needs and to satisfactorily undertake key everyday
tasks. Artificial hands, Prostheses and individually designed orthoses are definitely examples of
more complex devices but other widely available items can be utilized or adapted for domestic,
self-care/personal and other instrumental life skills. However, where amputation is effected in
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adolescence the occupational therapist is likely to have considerable involvement in providing
instruction in the control and use of prosthetic devices. In relation to prosthetic controls training
emphasis may be placed on body control motions, grasp/release and co-ordination of movements
using a TD and in relation to wider prosthetic usage focus will be on activity based training
pertaining to self-care, recreation and home, work or school evaluations as needed. (Carroll &
Edelstein, 2006).
To illustrate the range of assistive technology currently available, for assisting adolescents
to maximize their ability to undertake basic personal/ self-care tasks and reduce the need for
physical assistance from other, some appropriate devices, aids and techniques are now
mentioned. Additionally assistive technology may be required to lend educational and vocational
support for this group of adolescents as they transition to adulthood and some current advances
in computer technology are also outlined in addition to reference to environmental controls .
Devices for self-care and dressing - In the case of unilateral impairment, there may be
reliance on use of the residual limb and the other fully functional limb for carrying out tasks
mostly one-handed . For bilateral amputees feet may adeptly be used in place of the upper limb
for many activities. Dressing can be made easier through use of items such as shoes with
Velcro laces that can be closed with one hand, shirts/blouses with Velcro fastening instead of
buttons or us of a PantClip (available from Sammons Preston) that can help unilateral upper-
extremity amputees pull-up and button their own pants. Button loops/hooks can help upper
extremity amputees more readily guide buttons through buttonholes and dressing sticks can also
be used to position garments.
For meeting grooming and hygiene needs commercially available dental floss holders can
aid with dental hygiene and battery operated toothbrushes can be used by. Body/hair washing
drying and brushing can be problematic but ingenuity, trial and error learning and perseverance
are often factors which contribute to independent success in these areas. For instance showers
can be adapted with Hygenic body washers (large rectangular pads that attach to the wall with
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suction cups) and hair brushes can be strategically wall-mounted and brushed up against and
hair-driers might similarly be wall-mounted. (Bowers, 2001).
Toiletting for bilateral upper-extremity amputees can be challenging. Installed bidets for use
with a commode can be useful in the home and there are more sophisticated, but also more
expensive toilet systems, such as the Closomat which combines a water stream for cleansing and
air for drying. The control handles can be manipulated using a mouth stick with a long metal
hook (Bowers, 2001). However, physical assistance may sometimes be needed in some
circumstances when the individual is away from the home environment.
Feeding and Meal Preparation - Light-weight, combination knife and fork Cutlery sets (such
as those available from Maddak,Inc) allow for one-handed users to utilize a single device for
cutting and eating food. A device called The Eatery (also available from Maddak Inc) is also a
relatively simple device that enables bilateral upper-extremity amputees to eat independently
without using prostheses. At the other end of the spectrum switch activated systems such as the
Winsford Feeder (available from Sammons Preston) which is operated by head or chin
movements and brings a spoon from food to the mouth of the user, may be a means of helping
individuals with no arms to eat independently. Being able to cook and make meals for oneself is
an important life skill which adolescents may begin to experiment with prior to leaving home for
the first time. For meal-preparation spiked cutting/chopping boards can be invaluable for one
handed users and automatic can-openers such as the one touch can-opener can ease
frustration of trying to open cans. Jars can be opened a variety of ways with modified techniques
and devices. For instance a unilateral upper limb amputee who is fitted with a prosthesis can
grasp the middle of the container with the terminal device and then use the sound hand to
unscrew the lid. Alternatively if only one hand is being used, the jar can be secured with a piece
of dycem under it, and then the hand pushes down on the lid and then turns it. There are other
commercial aids to assist with this task, but are best being tried first wherever possible before
being purchased to see if they work for the particular individual user.
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Technology for facilitating educational participation for Adolescents with Upper limb
Differences
In many instances there may not be the need to use specific complex technological or
assistive devices with children with upper limb difference but this will depend upon the extent and
type of presentation which will affect how the adolescent is able to participate in school activities.
Some adolescents with unilateral limb loss may require only minor accommodations in the
classroom which then enable them to fully engage with the curriculum. These students, may for
example, be very capable of performing hand-writing tasks without specific remediation and can
be proficient at one-handed typing, or using standard keyboards rather than requiring adapted
versions. Likewise some students with bilateral limb absence, may be able to use writing
instruments dexterously with their toes, but may not want to do so in front of their school peers,
and so assistive devices and computer technology may be preferable and appropriate for
increasing access to the learning environment for these students. Where prostheses and
terminal devices are in use, they should enable the student to have functional grasp and strength
for pencil and paper work, keyboarding and being able to hold and place items (such as
backpacks, cans of soda) effectively. Any re - fittings occurring at this time are likely to include
requests from both parents and the child for prostheses which combine cosmesis with function.
(Ramdial, Wierzba, Kurtz and Hubbard, 1997) However, in addition to the personal preferences
and skill levels of individuals, the technology required always needs to be based on assessment
of needs, cost and training requirement considerations and what can realistically be provided in
relation to facilitating inclusion and engagement for the student in question.
Computers
Computer technology can open up the world for individuals with upper limb absence and
gives them access to a social life, information, support and even employment which becomes a
major area of focus when adolescents are on the brink of leaving school and deciding what they
become in their adult life. Some competence with computing skills is expected with most jobs
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these days and personal computers are also used routinely for managing aspects of our everyday
lives, such as online banking and shopping in addition to being a source of leisure activities, but
for many people with no hands, or only one-hand, typing, using a keyboard and a mouse may be
difficult. (Bowers, 2001) Major advances have been made in computer technology and many
products have been developed which can allow computers to be operated totally hands-free
(Bowers, 2001) . Such products include foot-controlled mouse consoles, or headmouse devices
which are activated by movements of the users head. A sip/puff switch or software is used to
perform the click function. Additionally, other integrated infrared/sound/touch switches can make
it possible for users to operate numerous devices and software with just an eye blink or other type
of body movement. Several speech recognition/ voice activated software packages (such as
Dragon Speaking 9) are now also available for providing access to the internet and facilitating
written applications on the computer.
Electronic Aids for daily Living and Environmental Controls
Electronic technology in rehabilitation has created further potential for increasing
independence for individuals with upper limb loss in the form of environmental control. Through
environmental control systems it is possible to operate for example lights, telephones, and
televisions, in a living or work area by use of residual control motions to activate either
microswitches, pneumatic switches or voice- controls. Mouth sticks, universal cuffs or
splints/orthotics may assist with accessing the systems but may not always be appropriate or
necessary. Before recommending any Electronic Aids for Daily Living (EADL) thorough
evaluation should take into account all environments where the EADL will be used, access
methods, feedback mechanisms and requirements, flexibility and regularity of use, installation
and cost. (Bain, 2003).
Driving Adaptations
The ability to drive may be of importance to the adolescent at this time and can be a major
asset for independence. The occupational therapist can give vital information and advice about
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possible vehicular modifications that can be made and can refer parents and the child to the
appropriate agency responsible for carrying out driving evaluations. (Morrissey et al, 2001).
Many individuals with upper limb deficiencies drive successfully and sometimes without
adaptations being made to vehicles. This is easier when cars are automatic transmission.
However, modifications can be made which may include spinning knob conversions being made
to steering columns, and windshield wiper controls and signal indicators being foot-operated
switches/pedals.
Implications for Future Practice and the importance of Increasing Occupational Therapy
training and Awareness of Assistive Technology applicable to Upper limb Loss
This paper has explored an area of congenital physical disability which is generally
unfamiliar to most occupational therapists unless they develop expertise in upper limb
dysfunction. Whilst occupational therapists may at some points in their practice come into
contact with the adult amputee population it has been highlighted that children born with upper
limb loss are, by the very nature of the rarity but also complexity of their conditions, seldom seen
routinely in occupational therapy clinical settings. Children with upper-limb deficiencies are
usually managed long-term by specialist multi-disciplinary facilities which are equipped to
address the numerous assessment and treatment considerations needing to be given to factors
of age, effects of maturation on function and level of deficiency of the limb, possible surgical
interventions, and psychosocial influences which can have a significant impact on body image,
successful management of transitions, rehabilitation programs, and outcomes for positive
occupational adaptation. A key aim of this paper was to investigate how adolescents with
congenital upper limb limb loss utilize assistive technology in their everyday contexts with
particular emphasis on managing self-care activities of daily living.
At the beginning of the paper a number of questions were posed which appear not to
have been addressed in mainstream occupational therapy journals or healthcare research
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literature pertaining to the adolescent population with this type of upper limb deficit and their
particular needs in this area of occupational performance. These questions were directed at
establishing if current assistive technology options can fully meet functional requirements for
activities of daily living and if they dont then what alternative strategies/techniques bridge the gap
which could make a difference in these areas.
There are numerous factors which shape personal preference choices for assistive
technology and some of these have been described in this paper . Although overgeneralizations
cannot be made about all adolescents who comprise this treatment population it has become
apparent from undertaking this inquiry that there are usually two clear paths which teenagers
with congenital upper limb deficiencies ultimately chose between. These are either the use of
customized and functional myoelectric prostheses which can be adapted for purpose with
differing terminal devices, or actual rejection of mechanical and complex devices in favor of
problem-solving approaches and some utilization of simpler aids, modifications and
environmental adaptations. With regards to the former, children whose deficiencies are terminal
transverse, for example below- elbow or above elbow, and who have had early initial and
successful fittings of prostheses as infants, at around 6 months of age, are good candidates
(Wenner, 1995). In relation to the latter, rejection most often occurs where children are either
bilateral amelic or phocomelic. If children with this level of deficiency are taught early on to use
their feet as hand substitutes they develop a high level of prehension, strength, flexibility and
sensibility and can accomplish most activities successfully and independently. Irrespective of
whatever route is taken, it is most important that children with upper limb difference cultivate a
strong self-identity and body image as they develop. Lack of this is acknowledged within the
prosthetics literature to be a probable contributory factor for rejection of prostheses in
adolescence but as yet has remained largely unexplored in research studies.
Further research for gaining the service user-perspective for this group is pertinent.
Unless it is known what these adolescents think themselves about the assistive technology
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available and their relationships to it as active users and consumers, can occupational therapists,
truly say that they are providing the best evidence-based practice, treatment interventions
rehabilitative approaches, for this pediatric population?
Biddiss & Chau (2007), comment that conducting good quantitative studies in this area is
challenging because of the heterogeneous population characteristics and the difficulty of
recruiting sufficiently sized populations on which to draw results. However, in relation to
looking at the personal factors which shape use of assistive technology qualitative and descriptive
research methods, such as case studies and in-depth interviews can be more appropriate for
gaining insights and information about the lived experience.
Healthcare professionals involved with considering the role of assistive technology for this
client group need to stay informed and aware of the alternatives which most appropriately and
beneficially meet needs. However, due to the infrequent nature of congenital upper limb loss
there is a paucity of experienced clinicians whether prosthetists, physicians, therapists or
psychologists with a depth of understanding of this area of pediatrics. Presently, occupational
therapists in training receive little instruction in relation to assistive technology, biomechanics and
specific upper-limb devices as they relate to the pediatric population. Although Occupational
Therapy is crucial in the rehabilitation of amputees and other upper limb conditions most
occupational therapy students seldom encounter children with the presentations described in
this paper or prosthetic users during their fieldwork or training experiences. Post-qualification
there appear to be limited opportunities for advancing theoretical knowledge and gaining practical
competencies in this field. One or two-day intensive workshops being run at OT schools by
OT practitioners specializing in this field and continuing education programs which address skills
in this area would appear to be necessary in order to increase the knowledge base of therapists
who may at some point encounter children with upper limb difference, outside of their usual
arena of practice.
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In conclusion, this paper has highlighted the different means by which assistive technology
can be an important adjunct to the facilitation of independence for those who experience differing
degrees of upper extremity limb loss and the attendant limitations and physical dysfunction which
can arise from this presentation. However, assistive technology should fit with the person
rather than vice versa and ultimately decisions made as to how this is purposefully incorporated
, into real life everyday contexts ultimately rest with the individual.
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