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THE CAREGIVER & OT’S GUIDE TO
CARINGFOR PARAPLEGICS
Published 2016. All Rights Reserved. A Division of New Edge Products
Helpful tips for caregivers and OT
22
THE CAREGIVER & OT’S GUIDE TO
CARING
FOR PARAPLEGICS
3
The Guide
Thank you for downloading Pants Up Easy’s eBook, “The Caregiver and
Occupational Therapist’s Guide to Caring For Paraplegics”. If you’re involved
in providing care for someone afflicted with a spinal cord injury (SCI), you
know just how devastating these injuries can be. There are few events that
can produce more life-changing effects. The Christopher and Dana Reeve
Foundation estimates the number of people suffering from some form of spinal
cord injury (SCI) at .4% of the population, or 1,275,000.
4
What causes paraplegia?
SCIs are most often the result of a trauma, such as a motor vehicle accident,
a fall, or even an act of violence. Or they may be brought on by disease: an
infection or a tumor can also affect the ability of the spinal cord to function
properly. No matter what the cause is, there’s a common theme to all SCIs.
Something affects the spinal cord’s ability to transmit messages from the brain
to the body and back. It typically causes some degree of lost or decreased
sensation as well as some amount of paralysis below the level of the injury. The
most extreme cases are known as paraplegia (paralysis of the legs and lower
body) and tetraplegia, or quadriplegia (paralysis of all four limbs).
There are additional challenges associated with injuries to the spinal cord.
People suffering from the effects of SCIs frequently experience chronic fatigue
and pain, and that often leads to emotional complications like anxiety or
depression. In short, it can be extremely difficult to lead a happy and productive
life after such an injury. Fortunately, however, with proper treatment and
support, it is indeed possible.
5
What is the role of the caregiver?
For paraplegics and tetraplegics, the support of a caregiver is an essential part
of the process or returning to a fulfilling and functional lifestyle. The primary
caregiver is generally a family member of a loved one. It’s not usually a role
which one chooses, but rather it appears to choose one, when circumstances
beyond our control thrust one into that position. A spinal cord injury and the
resulting paralysis can come at any time and without warning.
The role of caregiver is not one that is likely to be avoidable, and often cannot be
delegated to someone else. The work of giving care to someone with paralysis
can be extremely difficult and exhausting, both physically and emotionally, and
you may even sustain injuries (pulled muscles, etc.) while assisting a loved one
who is paralyzed. While we all consider it to be enormously rewarding to care
for someone close to us, there are still some days when it’s going to be difficult
to find any gratification or fulfillment.
As caregiver, you may work in relative isolation. But it’s important to remember
that your work and the challenges you face have a lot in common with those
of other caregivers. It’s essential to connect with other caregivers for support,
to gain strength, and for reassurance that you aren’t alone in your struggles.
Caregivers also need to be aware of the resources that are available to further
their efforts - the tools, as well as homecare products and services to ease the
burden of assisting someone with paralysis.
6
What about Caregiver Health Risks?
According to the National Center for Biotechnology Information, low
back pain is common among caregivers of patients with spinal cord injury
and is associated with duration of injury, level of injury, severity of injury,
and functional level of the patient.
7
What can Occupational Therapists Do?
Occupational Therapy (OT) practitioners fill a crucial role in aiding patients
who have sustained a SCI in their return to leading more of a productive
lifestyle. The goal of OT is to allow people with these injuries to return to
their homes and to again become a functioning member of their community.
Both occupational therapists and occupational therapy assistants have gone
through specialized education, with a focus on enabling people to once again
engage in meaningful occupations.
The general philosophy of Occupational Therapy is that everyone has the
desire as well as the right to participate in meaningful and valuable activities.
OT takes into consideration a number of factors which affect one’s ability
to perform, including physical, psychological, social, occupational and other
concerns. They assist SCI patients in setting of realistic goals and working with
them to develop the necessary skills to accomplish those goals.
8
The Path To Functional Independence
The work of the occupational therapist needs to be personalized for each
individual. Some people who have suffered a SCI can be expected to rapidly
return to functional independence. For others, however, whose injuries have
left them with more restricting effects, it may only be possible to achieve a
limited level of functionality. Even that may only be accomplished through a
carefully planned program of care, and through the use of modern technologies
and tools to assist them. It’s crucial to avoid making comparisons between the
performance levels of different patients. Although it’s reasonable to assume that
one’s level of functionality will be a product of the severity of the injury, one can’t
really use that to predict how fully or how rapidly they will recover. Even among
people with the same type of level of injury, there are numerous other factors
that also be expected to impact one’s degree of functional performance.
These factors include, but are not limited to:
• Neurological level of impairment (paraplegia vs. tetraplegia)
• Age at which the injury was sustained / length of time since then
• Degree of impairment - typically evaluated by use of the ASIA (American
Spinal Injury Association) Score or AIS (Abbreviated Injury Score)
• Other injuries or medical conditions (bone damage, nerve damage, arthritis,
heart conditions, etc.)
• Mental illness, including depression, anxiety, schizophrenia, etc.
• Alcohol or drug use / abuse
• Financial resources
• Support from family and friends.
• Other environmental factors
9
What are the ways in which occupational therapists can help?
Occupational therapy is an ongoing and potentially long-term process. It begins
in the Intensive Care Unit, and follows the patient through their hospital stay. In
most cases, the most intensive
services will be used in a rehab facility, and are likely to continue through
outpatient practices, helping the patients learn to apply and fine-tune their
newly acquired (or re-learned) skills. OT may also involve modifications to the
patient’s environment and activities.
Let’s look at some of the areas in which OT can support their SCI patients:
Education
Much of the work of occupational therapy consists of education. When an injury
reduces one’s use of their limbs, returning to activities like dressing, feeding,
and bathing can be overwhelming. The therapist should review the patient’s
activities as well as the environment they’ll be in. They’ll need to learn, all over
again, how to perform these functions. They can also identify changes that can
be made to the environment, such as support bars, as well as other showering
and bathroom assistance.
10
Skin management
One of the risks to people with SCI is that they may develop a pressure injury,
caused by muscle atrophy and reduced sensation. An occupational therapist
should intervene if the patient has had such an injury, or is at risk of developing
one. For those at risk, the therapist should provide education concerning skin
care, and discuss posture, best uses of equipment, etc. For those who already
have a pressure injury, and are bedridden, the therapist should inspect the
wound and their equipment, and review their routines and activities. They should
also make sure that the person’s bed and other equipment is appropriate, and
advise them on positioning and movement in bed. When the patient has healed
sufficiently that they’re able to return to a seated position, the therapist should
of course continue the review and oversight of their equipment and activities.
11
Bedroom Equipment
Bedroom equipment needs to be optimized for SCI patients, as they may spend
most of their time there. Electrically operated beds aid patients in changing bed
position as well as in moving in and out of the bed. A properly positioned bed
can eliminate the need for leaning on support bars, which put added stress on
one’s shoulders. An appropriate mattress should be chosen to reduce the risk of
pressure injuries.
12
Equipment for Transferring and Mobility
When the patient’s age or loss of upper torso strength make it difficult or
impossible to lift themselves, an electric hoist or other lifting devices can be
extremely valuable. They can also serve to prevent injuries and strain to one’s
shoulders, and provide a greater level of independence by enabling patients to
move, dress themselves, or go to the bathroom unassisted. There are also lifting
slings of various types, which can further aid with these activities. As with all
equipment, the therapist should do a thorough review of the patient’s needs and
the environment in which the hoist will be used.
Transfer boards will also frequently be employed to assist the patient in getting in
and out of the bed, shower, wheelchair, or vehicle. These also help in preventing
overuse of the shoulders when moving. There are a number of types of boards,
and the proper choice should be made based on the patient’s situation.
The wheelchair itself is another item for which patients will benefit from some
additional education. Counseling from the therapist on best use of the wheelchair
will help with mobility and functioning, and will also help the person in their
interactions with the community. Again, the use of a powered device can reduce
strain and injury to the shoulder area.
13
Additional support for people with SCI
Some other areas in which occupational therapist can assist SCI patients include:
• Helping them find leisure activities, and connecting them with community
groups and other relevant resources
• Working with the patients and their employers to facilitate their safe and
productive return to the workplace
• Providing education about peer resources and advocacy groups.
• Review and modification to methods of transportation
14A Publication of New Edge Products
Living in the wake of a spinal cord injury really requires a lifelong
commitment, on the part of the patient, their caregivers, and their
therapists. It’s going to be a long and constant process of reviewing,
improving, and maintaining healthy routines as well as learning to
engage in meaningful and rewarding activity. The challenges will
always be there, but caregivers and therapists can help improve
the quality of life of the patient by providing a safe and supportive
environment, and by helping them find ways to live life to its fullest.
A LIFELONG COMMITMENT
LEARN MORE