231. CCA Study Notes: Supporting Clients With Illness and Disability

The Big Picture

Illness and disability often affect many parts of a client’s life. Daily routines, work, family relationships, independence, feelings, and self-image might all change.

Each person responds differently. One client might feel calm during a serious illness. Another might feel frightened, angry, sad, or frustrated. A disability also does not mean that a person is ill.

Good support starts with seeing the person as an individual. Listen, avoid assumptions, respect choices, protect dignity and privacy, support independence, and use respectful language.

Look for Nova Scotia CCA Notes throughout this page for current provincial guidance.

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Course Notes: Key Ideas You Need to Know

Illness and Disability Are Different

Illness means loss of physical or mental health.

Disability means loss of physical or mental function.

A person living with a disability is not automatically ill. Many people with disabilities do not consider themselves ill.

Some people are born with disabilities and have never known life any other way. Many people who acquire disabilities later in life adjust to their situation and need no further medical care.

Illness and Disability Affect the Whole Person

A client’s condition might affect several dimensions of health.

These dimensions include:

• physical health
• emotional health
• social health
• cognitive ⓘ health
• spiritual health

For example, a major vision loss might affect hobbies and thinking activities, social contact, emotions, and spiritual life. This shows why support workers need to look beyond the condition itself.

No two clients experience illness or disability in exactly the same way.

Common Reactions to Illness and Disability

A new diagnosis or recently acquired disability often brings strong emotions and changes in behaviour.

Fear and Anxiety

Clients with serious illnesses often worry about:

• the effect of the illness on their family
• daily responsibilities
• finances
• their family’s future
• death
• changes in their family role

A client with a disability, disfigurement, speech impairment, or memory impairment might fear embarrassment around other people.

Some clients talk openly about fear and anxiety. Others keep these concerns private.

Key fact: A fear does not need to make sense to the support worker for the client’s fear to feel real.

Sadness and Grief

Illness and disability often involve loss.

A client might experience:

• loss of independence
• loss of confidence
• loss of position or role
• loss of hopes or plans for the future

These losses might cause intense grief.

Observe and listen to the client. Some clients prefer not to discuss their feelings. Others find comfort in talking with someone who listens and cares.

Depression

Fear, anxiety, sadness, and grief sometimes lead to reactive depression.

Clients with serious illnesses or progressive ⓘ disabilities are at risk for a more serious form called clinical depression. Some older clients who have lost lifelong friends or family members are also at risk.

A depressed client might appear:

• tired
• anxious
• uninterested in life
• less interested in contact with other people

A severely depressed client might be suicidal.

Report: Observe changes in the client’s mood, energy level, and behaviour. Report these changes to your supervisor immediately.

Denial

Denial means refusing to recognize or admit the truth.

A client who fears serious illness might minimize or deny symptoms. A client who knows about a serious health problem might still behave as though the condition does not exist.

Respond with understanding and a positive attitude.

Report: If the client’s denial might lead to harm, tell your supervisor.

Anger

Some clients feel angry about:

• limitations
• illness
• reduced control over their lives

They might direct anger toward family members, friends, health care workers, physicians, or support workers.

If a client directs anger toward you:

• stay calm
• remain patient
• respond gently
• avoid responding with anger
• try to understand the client’s needs and problems

You do not have to accept abuse.

What Shapes a Client’s Experience?

Many factors influence how a client experiences illness or disability.

These include:

• the nature of the illness or condition
• the client’s age
• physical fitness
• the amount and degree of pain or discomfort
• prognosis
• emotional, social, cognitive, and spiritual health
• personality and ability to cope with difficulties
• cultural background
• emotional, social, and financial support

Prognosis means the expected course of recovery based on the usual outcome of the illness. Outcomes range from full recovery to death.

Cultural background might influence how a client views illness, seeks treatment, and interacts with caregivers and health care workers.

Change and Loss

Serious illness and newly acquired disability often force clients to adjust to major changes.

Change in Daily Routine

Illness often changes a person’s normal schedule.

Time once spent working, socializing, or being with family might shift toward appointments, tests, and treatments.

Ordinary daily tasks might also become difficult. Getting to the bathroom, preparing meals, eating, and managing pain might become major concerns.

Change in Work Life

Some clients stop working or reduce their workload because of illness or disability.

Some clients feel rewarded and fulfilled by their work. When illness or disability forces them to stop working or reduce their workload, they might feel worthless. Loss of work might also cause financial problems and reduce social interaction.

Change in Family Life

Serious illness or disability often affects the entire family.

Family members might need to:

• change routines
• take on different roles
• give up activities
• provide more help

These changes often create stress. Severe family stress sometimes affects the health of other family members.

Change in Sexual Function

Illness and disability often affect sexual function.

A client might:

• feel less interested in sex
• feel unfit for closeness or love
• experience physical difficulty with sexual activity

Medication effects or the illness itself might affect sexual function. Reproductive surgery, heart disease, stroke, spinal cord injuries, and nervous disorders are examples of conditions associated with these changes.

Changes in sexual function might affect both the client and the client’s partner.

Fear, anger, worry, and depression are common and expected reactions. Time, understanding, a caring partner, and professional counselling might help with adjustment.

Loss of Independence

Independence means being able to do things for oneself.

Loss of independence often feels especially difficult when illness or disability begins suddenly and recovery seems unlikely.

CCA action: Support clients in remaining as independent as possible.

Encourage clients to participate in their care, carry out steps they can do themselves, and make decisions when they are able.

Loss of Dignity

Independence and dignity closely connect.

A client who needs help with private personal care or bodily functions might feel embarrassed or lose a sense of dignity.

CCA action: Stay sensitive to the client’s need for dignity during every part of care.

Change in Self-Image

Self-image means the way a person views themselves.

Changes in appearance, movement, walking, or speech might affect self-image. A person who loses a body part or develops scars might feel unattractive or extremely self-conscious.

Do not assume how a client feels about these changes.

Do not judge the client’s behaviour.

Do not compare one client’s reaction with another person’s response.

Show warmth, acceptance, and respect.

Compassionate Care in Daily Support

Compassionate care means responding to the individual client rather than treating every person the same way.

The care points below follow DIPPS: dignity, independence, individualized care, preferences, privacy, and safety.

Protect Dignity

Personal care often places clients in situations that feel embarrassing or exposing.

During care:

• never expose the client’s body unnecessarily
• pay attention to facial expressions and gestures
• avoid reactions that show disgust or discomfort

A negative facial expression or gesture will make the client feel ashamed.

Support Independence

Encourage clients to participate in their own care.

Before starting a task:

• explain what you are about to do
• ask whether the client is able to help
• allow the client to complete parts of the task when able
• let the client make decisions when able

A client who needs physical help with dressing might still choose what to wear.

Provide Individualized Care

Client-centred care needs to fit the individual.

Consider the client’s:

• personal choices
• physical strengths and limitations
• cognitive strengths and limitations
• personality
• care plan

Respect personal practices and choices when planning or adapting care.

Ask About Preferences

Ask clients how they prefer tasks to be done.

Useful questions focus on:

• what matters to the client
• what the client enjoys
• what the client is able to do
• what feels easy
• what feels difficult

Do not assume that your preferred method matches the client’s preference.

Protect Privacy

Some clients need time to adjust to caregivers entering their personal space.

Avoid: Never snoop through a client’s belongings.

Actions that protect privacy include:

• knocking before entering
• drawing curtains and blinds
• closing doors and windows
• covering the client during personal care
• keeping client information confidential ⓘ

Clients living with illness or disability still have sexual needs, including touching, caressing, and embracing. Allow privacy for clients to meet these needs.

Support Safety

Clients living with illness or disability have special safety needs.

CCA action: Check with your supervisor and the care plan for the client’s specific safety measures.

Look at the client’s room from the client’s point of view. Check whether the path to the bathroom is clear and whether objects create a risk of falls or injury.

When you recognize tiredness or overexertion, give the client time to rest.

If you are unsure whether the client’s safety needs are being met, speak with the client and your supervisor.

Stigma and Discrimination

People sometimes respond negatively to illness and disability.

They might:

• stare
• avoid eye contact
• ignore the person
• speak to another person instead
• treat an adult like a child
• blame someone for a condition

These attitudes hurt clients and might affect their social support.

Stigma

Stigma means social shame linked to a circumstance, quality, or person. Stigma leaves a person feeling ashamed or embarrassed.

A person affected by stigma is viewed as different in a negative way.

Discrimination

Discrimination means unfair treatment based on characteristics such as:

• physical characteristics
• health history
• group membership

Some people living with AIDS, mental health disorders, or substance abuse disorders face discrimination.

Rejection and blame might contribute to:

• isolation
• loneliness
• depression
• self-blame
• guilt

Clients and their families might also lose needed social support.

Respectful Language Matters

Words shape how people are treated.

Use language that is:

• inclusive
• respectful
• accurate
• nonjudgmental
• nonemotional

A person is more than a condition.

Avoid using an adjective as though it names an entire group. For example, use “people with disabilities” rather than “the disabled.”

Do not present people with disabilities as tragic figures or as extraordinary heroes simply because they have a disability. Avoid words such as brave, courageous, or inspirational when describing a person with a disability.

Avoid wording that creates pity, guilt, shame, insult, or a sense of hopelessness.

Expressions such as “suffers from,” “stricken with,” and “afflicted by” suggest constant pain and a sense of hopelessness.

Avoid words such as burden, incompetent, or defective. These words suggest inferiority and exclusion.

Everyday Words Still Belong

A disability does not require different everyday words.

A wheelchair user still goes for a “walk.” A person with a visual impairment still “sees” what someone means.

The activity might happen differently. The everyday word does not need to change.

Invisible Disabilities Are Still Real

Some disabilities are not visible.

Examples given include:

• epilepsy
• hemophilia
• mental health disabilities
• learning disabilities
• developmental disabilities

People with invisible disabilities also face barriers and negative attitudes.

Focus on the Issue, Not the Disability

Focus on the issue rather than the disability. If the disability is not relevant to the context, it does not need to be included.

Respectful Terms to Remember

General and Mobility Language

Avoid	Use
Birth defect, congenital defect, deformity	Person born with a disability, person who has a congenital disability
Blind, visually impaired, when used as group labels	Person who is blind, person with a visual impairment
Confined to a wheelchair, wheelchair-bound	Person who uses a wheelchair, wheelchair user
Cripple, crippled, lame	Person living with a disability, person living with a mobility impairment
Handicapped, when used as a group label	Person who lives with a disability
Handicapped parking or bathrooms	Accessible parking, accessible bathrooms
Invalid	Person living with a disability
Physically challenged, physically handicapped, physically impaired	Person living with a disability
Normal	Person without a disability
Victim of cerebral palsy, multiple sclerosis, arthritis, or another condition	Person who has the condition, person living with a mobility impairment, or person living with a disability

When the specific condition matters, respectful wording includes “person who lives with a spinal cord injury” or “person who has arthritis.”

Hearing and Speech Language

Avoid	Use
Deaf-mute, deaf and dumb	Person who is deaf
Hard of hearing, when used as a group label, hearing impaired	Person who is hard of hearing
Inarticulate, incoherent	Person who has a speech disorder, person who has a speech disability

Culturally and linguistically deaf people who use sign language are identified as the Deaf, with an uppercase D.

People who do not use sign language are referred to as the deaf, with a lowercase d, or as persons who are deaf.

A person who is hard of hearing is not deaf. The person might use an amplification device or system.

Mental Health, Learning, and Intellectual Disability Language

Avoid	Use
Insane, lunatic, maniac, mental patient, mentally diseased, mentally ill, neurotic, psychotic	Person with a mental health disability
Learning disabled, learning disordered, dyslexic, when used as labels	Person living with a learning disability
Mentally retarded, defective, feeble minded, idiot, imbecile, moron, retarded, simple, mongoloid	Person living with an intellectual disability

Use “insane” or “unsound mind” only in a strictly legal sense.

“Person with a mental health disability” is a broad term. When the specific condition matters, wording such as “person who lives with depression” or “person who lives with schizophrenia” gives more detail.

When an intellectual disability needs to be identified, specify the type when that information is relevant.

Other Respectful Language

Avoid	Use
Epileptic, when used as a label	Person who lives with epilepsy
Fit, attack, spell	Seizure
Person who has trouble…	Person who needs…
Spastic	Person who lives with or experiences spasms
Suffers from, stricken with, afflicted by	Person living with a disability

People with disabilities do not necessarily suffer because of the disability.

Common Mix-Ups

Wrong Idea	Better Idea
Illness and disability mean the same thing.	Illness involves loss of health. Disability involves loss of function.
Everyone with a disability is ill.	Many people living with disabilities are not ill.
Clients react to serious illness in the same way.	Each client experiences illness and disability differently.
Stigma and discrimination mean the same thing.	Stigma involves social shame. Discrimination involves unfair treatment.