Caring for...Patients with disabilities

During our daily rounds, we encounter patients of all backgrounds who may have cognitive, linguistic, physical, visual, or hearing disabilities. According to the U.S. Bureau of Statistics, there are over 2.8 million (5.2%) school-age children and 19.5 million adults living with physical, visual, and hearing disabilities. Healthcare organizations are expected to meet the needs of this diverse population and, as healthcare providers, we must be sensitive to patients with health-based challenges and disabilities.

In this module, we give you tips on providing excellent care and unique cultural sensitivity for your patients with disabilities.

Cognitive disabilities

Common examples of patients with cognitive disabilities include those with:

• traumatic brain injury (TBI) or anoxic brain injury (ABI)
• Down syndrome
• autism spectrum disorders
• mental disorders.

Patients with TBI or ABI may experience reduced memory retention, comprehension variances, and cognitive dysfunction. These patients may benefit from individualized reminders, such as written lists, notes, or electronic alarms, to cue them to perform certain tasks, such as when to take medications or check their blood glucose. Assist the patient in overcoming barriers that inhibit his or her independence and utilize the support of the patient's caregiver when possible.

The patient may have posttraumatic stress disorder (PTSD) due to his or her injury and be fearful when approached. Explain each action, procedure, intervention, or medication before you touch the patient. Speak clearly and distinctly and make eye contact. Monitor your tone of voice and speaking volume when discussing care and asking the patient about needs and comprehension. Frequent repetition may be required because memory loss is common.

These patients may have either expressive or receptive dysphasia; if the patient is unable to communicate, verbally ask him or her to squeeze your hand as a yes or no response to questions. The key is to establish and maintain an open dialogue in any manner possible with the patient.

Down syndrome can result in a broad range of mild, moderate, or severe cognitive and physical delays. Each patient is unique in his or her abilities and limitations, and care should be tailored to individual needs. When providing care for a patient with Down syndrome, tailor care to the patient's developmental age rather than his or her actual age. Talk to the patient's caregivers and ask questions so you can understand where your patient is developmentally.

Down syndrome may or may not affect the patient cognitively. Develop a picture of your patient's needs by discussing home life and baseline functionality with the patient and his or her caregiver. Just as it's vital to include caregivers, it's vital not to exclude patients; they have much to offer no matter their developmental age.

Respect that these individuals may have been poked, prodded, humiliated, and scorned their entire lives. Be respectful, kind, and don't talk down to them or their loved ones. Maintain eye contact and a welcoming demeanor that invites communication. Understand there may be a healthy fear of healthcare personnel. We must maintain an open dialogue and convey that the patient's thoughts, ideas, and concerns are important and welcome.

Patients with an autism spectrum disorder can present a challenge for nurses. Many children and adults with autism spectrum disorders have difficulty communicating with words that they're becoming frustrated, anxious, or uncomfortable. They may begin humming, pacing, or yelling. Consult with the patient's family or caregiver to find out what historically has worked to calm the patient down.

Common nonpharmacologic interventions, such as decreasing environmental stimuli by reducing noise and distractions (such as the TV), can often greatly reduce the patient's anxiety. Having the family provide familiar items may also reduce anxiety. It's best to have the same healthcare provider care for the patient during each visit because patients with autism spectrum disorders do better with comfortable routines, and familiar faces and places. For example, a child with an autism spectrum disorder may have a regimented dressing routine, such as putting on pants first, then the left sock, followed by the left shoe, then the right sock, followed by right shoe, and putting on a shirt last. Ask the patient and his or her caregiver about activities of daily living routines to minimize anxiety and frustration.

Again, as with Down syndrome, make no assumptions regarding the patient's intelligence, level of understanding, or ability. Ask the patient and his or her caregiver for input and assistance in determining approach, language, and needs assessment. When providing care for a patient with an autism spectrum disorder, recognize and convey appreciation for the healthcare milestones that he or she has achieved.

Many patients experience mental disorders, such as PTSD, paranoid schizophrenia, clinical depression, and bipolar disorder. These disorders can impact the patient's quality of life, causing unusual shifts in mood, energy, and activity levels, and affecting the ability to carry out daily tasks and engage in social or occupational activities that he or she once enjoyed.

When providing care for these patients, maintain eye contact and convey the reason for the healthcare interaction in a reassuring voice. Use concrete terms and avoid vague or generalized descriptions. Although there are similar signs and symptoms with some mental disorders, remember that no two patients are alike. Be respectful of this and ask questions, investigate, and show sincere interest and a desire to help the patient address his or her individual needs.

Linguistic disabilities

Common examples of patients with linguistic disabilities include those with:

• expressive aphasia
• oral cancer
• congenital defects such as cleft pallet
• cerebral palsy
• vocal cord paralysis
• vocal cord abnormalities
• laryngeal cancer
• laryngectomy
• tracheostomy
• amyotrophic lateral sclerosis (ALS).

It's crucial to be open-minded and intuitive when working with patients who have communication challenges. Encourage all communication efforts and be receptive and understanding when the patient attempts to communicate. Maintain eye contact to convey respect and that you're welcoming the communication. These patients may become frustrated, embarrassed, and even angry when unable to articulate their needs. Remember to be patient and flexible; use hand gestures and provide writing tools (pen and paper), communication boards, and pictures/illustrations when working with patients who have linguistic disabilities.

Always communicate clearly what intervention, medication, or treatment you're there to provide before touching the patient. Allow adequate time for the patient to indicate that he or she understands and consents to the intervention. This conveys respect and shows that you value the patient.

Patients with ALS often use communication-assistive devices, such as an electronic eye gaze communication system. This system comprises a computer screen with an onscreen keyboard that's controlled by an eye gaze camera. The camera uses an LED to measure the glint and bright-eye reflections from the individual's eye as he or she shifts over the selected letter, word, or phrase. The computer then electronically speaks the selection.

Patients with a tracheostomy may have a speaking valve, which attaches to the outside of the deflated tracheostomy cuff. The valve opens when the patient breathes in; when the patient breathes out, the valve closes and air flows around the tracheostomy tube and up through the vocal cords, allowing sounds to be made. Encourage the patient to utilize the speaking valve and interact freely with family, friends, and healthcare providers to optimize his or her emotional wellness. If the patient utilizes a vocal prosthesis, such as an electro-larynx or voice amplifier, ensure that it remains charged in the docking station when not in use.

Tracheostomy patients who can't tolerate a speaking valve because of low oxygenation should be encouraged to use a communication board or pen and paper. Your patient's voice should be heard even when he or she can't speak.

Tracheostomy patients may have episodes of coughing with or without secretions. Convey sensitivity and understanding to these patients because they may be self-conscious about this. Many long-term tracheostomy patients experience anxiety about the physical appearance of the tracheostomy. Inform the patient that lightweight, quickly removable tracheostomy covers can be purchased in various styles, fashions, and colors fairly inexpensively; this can reduce anxiety and increase socialization.

Physical disabilities

Common examples of patients with physical disabilities include those with:

• stroke
• amputation
• heart failure with activity intolerance
• muscular dystrophy
• cerebral palsy
• traumatic injury.

Many patients live independently with severe physical disabilities. For instance, there are patients with paraplegia who have modified automobiles that allow them to drive.

Conduct an open-ended assessment of the patient's abilities, as well as his or her limitations. Perform a full clinical assessment that takes into account the patient's disabilities. Having the proper environment and space for walkers, wheelchairs, and any assistive devices is essential. Handrails, large chairs with side rails, turn-around space, and widened entry doors are important. These patients may have a high fall and injury risk.

Consult with other members of the interdisciplinary team to see if modifying the patient's environment to better meet his or her daily needs is possible.

Visual disabilities

Common examples of patients with visual disabilities include those with:

• peripheral retinopathy
• blindness
• color blindness or color vision deficiency
• hemianopia (loss of partial visual field).

Damage to the visual pathways can result in temporary or permanent loss of sight. Most patients are able to adapt their home and work environment to allow them to be independent.

When patients with visual disabilities enter your healthcare facility, the environment is unknown and can present a barrier to their ability to perform basic tasks. Ensure that the patient knows the layout of the room and the routine of the staff members or clinical unit. Walk the patient around the room and allow him or her to count the number of steps to and from each area, such as the door, bed, chair, toilet, or sink. Provide a call light and telephone with raised Braille if the patient has complete vision loss. Provide large font or Braille reading materials for patient education. Of note, these patients may need standby or physical assistance to transfer or ambulate.

If the patient is color blind, he or she will have difficulty differentiating red, yellow, blue, and green colors. You may have to alter the environment by adding different textured tapes to the bed call light to identify emergency buttons.

Tell patients where food items are located on their meal trays using a face clock numerical system. For example: Your milk is at 3 o'clock, your cereal is at 12 o'clock, your strawberries are at 6 o'clock, and eating utensils are at 9 o'clock.

Inform the patient of what you're planning to do and the rationale behind it before touching or invading his or her personal space. It's easy to become so focused on completing a task that we can inadvertently forget that it's important to tell patients what we're going to do, where we'll be touching them, and why.

Hearing disabilities

Common examples of patients with hearing disabilities include those with:

• Meniere’s disease
• hearing loss of aging (presbycusis)
• hearing loss of unknown cause (idiopathic hearing loss)
• acoustic neuromas or nerve tumors
• drug toxicity.

Hearing impairment can range from very mild hearing loss to total loss of hearing (deaf). Hearing loss affects all age groups and is classified as either sensorineural or conductive.

Conditions affecting the cochlea, eighth cranial nerve, spinal cord, or brain cause sensorineural hearing loss. There are also more than 200 medications and chemicals that can cause hearing loss, including some antibiotics and chemotherapy drugs, aspirin, loop diuretics, and certain drugs used to treat erectile dysfunction. Chronic medical conditions, such as heart disease, hypertension, and diabetes, put ears at risk by interfering with the blood supply.

Conditions that affect the ear canal, eardrum (tympanic membrane), and middle ear lead to conductive hearing loss. Examples of conductive hearing loss include occlusions (ear wax blocking the ear canal), otitis media, and otosclerosis.

Patients who have a hearing impairment or who are deaf often require communication assistance to convey their questions and healthcare needs. The healthcare team, patient, family, and caregiver need to be able to understand each other and avoid misunderstandings. This can be accomplished by using a medical sign language interpreter, computer-aided transcription services, telecommunications devices, and written materials.

Many patients who are deaf utilize a telecommunication device for the deaf, or TDD—an electronic device for text communication via a telephone line, used when one or more of the parties have hearing or speech difficulties. Patients may also rely on a computer, mobile device, or electronic device with a full keyboard.

It's beneficial for the healthcare team to be made aware of a patient's hearing impairment in advance because the team will have the opportunity to arrange interpreter/sign language personnel before the patient arrives. If you're unable to preplan a patient's visit, have communication tools available.

Patients who are deaf should receive care in a clinical space that's evenly lit, with no glare in the patient's visual background. This allows the patient to see you and assess the interaction by viewing body language. It's important to smile and use open and welcoming body language that encourages interaction. Faces and hands should be kept clear of any obstructions, such as masks or clipboards, because many patients can read lips and barriers can inhibit their ability to receive the information you're conveying.

According to 2014 research, there are approximately 62,000 Americans who are deaf and blind. Patients who are deaf-blind often communicate using tactile sign language, such as tracking, tactile fingerspelling, and print on palm, or tadoma (placing the thumb on the speaker's lips and the fingers along the speaker's jawline to speech read). Communication methods vary, depending on the cause of the combined vision and hearing loss, and the patient's education level. Remember to ask your patient how he or she prefers to receive information.

Caring for the individual

Individualized care is vital when addressing patients' disabilities, as well as their abilities. We must remain committed to providing culturally sensitive care for our patients with disabilities and make sure we promote their abilities, skills, and strengths to maintain their current health status and resolve their healthcare needs.