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.

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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