NSG210 Hinkle Ch. 7: Disability and Chronic Illness

Source: Hinkle & Cheever, Brunner & Suddarth’s Medical-Surgical Nursing 15e, Chapter 7, pp. 141-165 (textbooks/HINKLE_MS_CH07.pdf, also in textbooks/exam01/). Week 02 reading; on Exam 1 (disability and chronic illness was 3 of 34 med-surg questions). See also nsg210-week-02-summary.

Learning Outcomes

Compare disability, chronic illness, and chronic disease.
Differentiate models of disability.
Analyze how disability influences nursing care decisions and actions.
Identify factors in the rising incidence of chronic conditions.
Describe characteristics of chronic conditions and nursing implications for patients and families.

Key terms:

Chronic disease: health problem requiring long-term management (also noncommunicable disease, chronic condition)
Chronic illness: the person’s experience of living with a chronic disease, including their perception and others’ responses
Disability: restriction or lack of ability to perform an activity in a normal manner; impairment at the level of the person (bathing, dressing, walking, communication)
Cognitive disability: limited mental functioning, difficulty with communication, self-care, social skills
Developmental disability: onset before age 22; cognitive, physical, or both
Intellectual disability: onset before age 18; limits in intellectual functioning and adaptive behavior
Sensory disability: impaired sight, hearing, smell, touch, or taste
Multiple chronic conditions (MCC): more than one chronic disease
Noncommunicable diseases: not caused by acute infection
Secondary health conditions: physical, mental, or social disorders resulting from an initial disabling condition

I. Disability

A. Definitions

Disability: difficulty talking, hearing, seeing, walking, climbing stairs, lifting, performing ADLs, schoolwork, or a job
Severe disability: unable to perform one or more activities, uses an assistive device for mobility, needs help with basic activities, or receives federal benefits for inability to work
WHO: disability is the interaction between a health condition and personal and environmental factors (attitudes, inaccessible transportation and buildings, limited supports)
WHO International Classification of Functioning, Disability and Health (ICF, 2001): umbrella term for impairments, activity limitations, participation restrictions, environmental factors
- Impairment: loss or abnormality of body structure or function
- “Societal participation” replaces “handicap” - environment may matter more than the condition itself
ADA definition: (1) physical or mental impairment substantially limiting one or more major life activities, (2) a record of such impairment, or (3) being regarded as having one

B. Prevalence

Over 1 billion people worldwide (about 15%); the world’s largest minority; over 80% live in low- and middle-income countries
US: 1 in 4 noninstitutionalized adults (61 million) in 2016
More than 46% with one disability have others
Under 65, higher in men; over 65, higher in women
Higher among American Indians, Alaska Natives, adults below poverty level, southwestern US; higher in African Americans and Whites than Hispanics and Asians
Employment 19.1% vs 65.9% without disability; poverty 29.6% vs 13.2%

C. Categories and types

Cognitive, developmental (spina bifida, cerebral palsy, Down syndrome, muscular dystrophy, dwarfism, osteogenesis imperfecta), intellectual, sensory, psychiatric, physical
Acquired: sudden injury (TBI, spinal cord injury, amputation), acute nontraumatic disorder (stroke, MI), or progression of chronic disease (arthritis, MS, Parkinson’s, COPD, diabetic retinopathy)
Visible or invisible; may affect only IADLs (shopping, laundry, housekeeping, finances) or ADLs; may be temporary
Challenge: hiring and supervising in-home caregivers who provide intimate care (role boundary blurring)
Secondary conditions (pressure injuries, UTIs, low bone density, depression) are often predictable and preventable because of a “narrow margin of health”
Comorbidities (cardiac disease, cancer, hearing loss) are not caused by the disability
Many people with disabilities are independent, productive, raise families, work full time; most prefer and are able to live at home

D. Models of disability (Chart 7-2)

Medical model: disability is the person’s problem, treated by professionals as experts; promotes passivity and dependency; views people with disabilities as tragic
Rehabilitation model: disability is a deficiency to be fixed by a specialist; failure to overcome is seen as failure
Social (barriers) model: disability is socially constructed by physical and social barriers; overcome by removing barriers
Biopsychosocial model: integrates medical and social; critics say the condition still defines the person
Functional model (ICF): health components rather than consequences of disease
Interface model (developed by a nurse, Goodall): disability at the intersection of diagnosis and environmental barriers; the person defines problems and directs solutions; empowering rather than promoting dependency; basis for nurses as advocates
Others: identity (positive identity), human rights (dignity, policy), cultural, charity (humane but views people as victims), economic (ability to work)

E. Quality health care (Chart 7-3)

Communication: ask about preferred accommodations (sign language interpreter); speak to the patient, not companions; people-first language
Accessibility of rooms, restrooms, labs, imaging; verified by a person with a disability; appropriate equipment for mammography, gynecologic and dental care
Assume the patient can participate; usual health history including screening, sexuality, reproductive health
Disability-specific history and positioning for complete exam including pelvic, testicular, rectal
Assess for abuse (physical, emotional, financial, sexual); refer to accessible shelters
Assess and treat depression as in anyone else; do not assume it is normal with disability
Address aging, secondary conditions, home accommodations, immobility risks
Patient education in alternative formats (large print, Braille, audio)
Focus on independence and empowerment; insurance and social work referrals

II. Legislation, Rights, and Barriers

A. Federal law

Rehabilitation Act of 1973: no discrimination by organizations receiving federal funds (many hospitals, long-term care, mental health centers); equal access to services
Americans With Disabilities Act (ADA) 1990: access to jobs and community without discrimination; “reasonable accommodations” (accessible facilities, adjustable exam tables, ramps, grab bars, elevated toilet seats, TTY devices, sign language interpreters)
ADA Amendments Act (2008, effective 2009): broad definition; use of assistive devices or medications (other than eyeglasses and contacts) does not change whether a person qualifies; shifts focus to accommodation
Reasonable accommodations are the financial responsibility of the provider or facility, not the patient
Family members should not serve as interpreters (privacy, confidentiality, errors)
UN Convention on the Rights of Persons with Disabilities (2006): right to highest standard of health care; not ratified by the US
Surgeon General’s Call to Action (2005): health professionals must become knowledgeable about disability
Healthy People 2020 midcourse: goals met for 44.6% of objectives for people without disabilities vs 30.6% with disabilities

B. Communication (Chart 7-4)

General:

Person first; treat adults as adults; first names only if used for everyone
Offer help, do not insist; ask how to help and follow directions
Speak directly to the person, not the companion
Allow extra time; people-first language (“person with a disability,” not “the diabetic”)

Mobility:

Do not assume abilities; do not push a wheelchair or grab an arm without asking; mobility aids are personal space
Sit at eye level for conversations longer than a few minutes (Figs. 7-1, 7-2: standing over the patient or talking to the mother is inappropriate)
Shake hands

Vision loss:

Identify yourself and others; touch the arm lightly; normal tone; announce when leaving
Specific directions (“left 20 feet,” clock cues); let the person take your arm; place hand on chair back
Do not pet or distract a service animal without permission

Hearing loss:

Ask preferred method; talk to the person, not the interpreter (interpreter lags behind)
Get attention first (wave, light touch); speak clearly without exaggerating or shouting; face the person for lip reading; do not talk while writing; reduce background noise; do not pretend to understand

Speech disabilities:

Be patient, do not speak for the person; ask them to repeat, spell, or write; short yes/no questions; encouraging, not correcting

Intellectual and cognitive:

Treat adults as adults; concrete language; avoid left/right directions; repeat in different ways; verify answers (may tell you what you want to hear); exact instructions (“back at 4:30”); few directions at a time; reduce noise

Psychiatric:

Clear simple communication; listen; do not patronize; do not panic or call police for a crisis - calmly ask how to help; do not blame

C. Barriers to care

Structural: stairs, narrow doors, inaccessible restrooms
Attitudinal: assuming poor quality of life, dependence
Lack of information, transportation, low income, finding knowledgeable providers, past negative encounters, reliance on caregivers
Women with disabilities get fewer pelvic exams and Pap tests (transfer difficulty, believing they are not needed, access, transportation); more severe disability, fewer exams
African American women with intellectual disability less likely to get mammograms
Rural residents face fewer resources; community membership and belonging support well-being (Chart 7-5)
Working people with disability 2-4 times more likely to delay care

D. Federal assistance

Medicare: 65 and older, permanent kidney injury, qualified disabilities
Social Security Disability Insurance (Title II): worked 40 quarters and paid Social Security taxes; also those disabled before 22 who are dependents of insured parents; disabled widows or widowers 50-60
Supplemental Security Income (Title XVI): disabled with limited income and resources
Medicaid: home and community-based services
Affordable Care Act: no denial for preexisting conditions, no lifetime caps; disparities persist

III. Nursing Care of Patients With Disability

A. During hospitalization

Ask preferences for ADLs; keep assistive devices available; arrange room with patient input (a bed left elevated may prevent independent transfer)
Accommodate service animals
Hearing or vision loss: alternative communication; staff aware patient may not respond to intercom or phone; orient to room; normal voice
Speech disability: speech-language therapist referral
Intellectual, cognitive, psychiatric: ensure understanding, safe low-stress environment, keep routines, consult family caregiver

B. Health promotion

Often neglected; people with childhood hearing loss may miss health information; encourage healthy diet, exercise, social interaction, screening
Disability can increase need for screening (bone density earlier or more often); refer to accessible screening sites; PT consult for safe exercise
Disability is never a reason to skip recommended screening (mammography, testicular, prostate)
Osteoporosis risk higher with limited weight-bearing, bone-depleting medications (antiseizure drugs)
Classes on nutrition and weight for wheelchair users; safer sex classes for adolescents and young adults with spinal cord injury, TBI, developmental disabilities
Address relationships, sexuality, pregnancy; teach recognition of abusive relationships
Avoid alcohol and OTC medications with antispasmodic and anticonvulsant drugs

C. Veterans

18.5 million US veterans; over 41% of post-9/11 veterans have disabilities (vs 25% of earlier eras); more limb loss and TBI from explosive devices
Ask “Have you ever served in the military?”

D. People-first language

“Patient with diabetes,” not “diabetic”; “person with a disability,” not “disabled person”; “person who uses a wheelchair,” not “wheelchair bound”

E. Gerontologic considerations

Two thirds of Americans 85 and older have functional limitations; age-related disabilities include osteoarthritis, osteoporosis, hearing loss
Most people with disabilities are under 65
People with preexisting disability often show aging changes earlier: crutch users develop upper extremity joint problems; polio survivors develop increasing respiratory symptoms, weakness, fatigue (post-polio); women with mobility limits develop bone loss before menopause
Concerns about future support; aging parents fear for adult children with intellectual or developmental disabilities - identify community resources

F. Medical-surgical practice

Disability is not only a rehab, pediatric, or geriatric issue
Increased risk of unintentional injury (falls most common) and aging-related chronic disease
Equipment: adjustable padded exam tables, birthing chairs for pelvic exams, ramps, grab bars, raised toilet seats
Care for the presenting problem (for example vaginal bleeding) without focusing only on the disability; do not defer a complete exam because of physical or cognitive disability

G. Home and transitional care (Chart 7-6)

Teach in alternative formats; ensure everyone knows warning signs of stroke, heart attack, cancer; teach BP and glucose self-monitoring
Consider how disability affects adherence and follow-up; ask about difficulty arranging care; provide lists of accessible sites; OT, PT, speech therapy for home modifications
Transitional care nurses ensure services are in place at discharge, make home visits, support families
Checklist: impact on function and roles, lifestyle changes, medications, prescribed regimens (skin, bladder, bowel, weights), supplies, durable medical equipment, adaptive equipment, support groups, transportation, recreation, follow-up, screening

IV. Chronic Disease and Chronic Illness

A. Definitions and scope

Chronic conditions: long-term, episodic, continuous, or progressive; common symptoms pain, fatigue, sleep disturbance, difficulty adjusting to uncertainty
National Center for Health Statistics: lasting 3 months or more; CDC: 1 year or more, can be controlled but not cured
Irreversible, prolonged, unlikely to resolve spontaneously
Six in 10 US adults have a chronic disease; 7 of 10 leading causes of death; cancer and heart disease nearly half of deaths; chronic disease causes over two thirds of deaths globally
86% of US health care spending relates to chronic disease; $3.5 trillion annually
Diabetes is the leading cause of kidney failure, lower extremity amputation, and new blindness in adults
One third of adults and one in five youths have obesity
Rural residents more likely to have chronic disease
Chronically critically ill: long-term technology dependence (ventilation, dialysis)

B. Multiple chronic conditions (Chart 7-8)

About half of adults (117 million) have one or more; 1 in 4 have two or more; 3 in 4 over 65 have MCC
Risks: conflicting advice, adverse drug effects, duplicate tests, preventable hospitalizations
Five or more conditions account for 41% of health spending; 93% of Medicare spending is for MCC
Women more likely than men; more conditions mean higher risk of premature death, hospitalization, poor function

C. Health disparities

Low income and poor insurance reduce screening and care; chronic illness can cause poverty
Disparities: higher incidence, earlier onset, faster progression, poorer outcomes
Social determinants of health (SDOH): income and social status, employment, education and literacy, childhood experiences, physical environment, social support and coping, healthy behaviors, access to care, biology and genetics, gender, culture, race and ethnicity
Life expectancy differs up to 48 years between countries

D. Adjustment factors

Suddenness, extent, and duration of lifestyle changes
Uncertainty of course and outcome
Family and individual resources for stress
Support from family, friends, community
Stage of individual and family life cycle
Previous experience with illness and crises
Personality; unresolved anger or grief
Reactions (shock, disbelief, anger, resentment) recur when symptoms worsen or return

E. Causes of increasing chronic conditions

Fewer deaths from infectious disease (immunization, new drugs) and from acute conditions (aggressive MI and trauma care)
Lifestyle: smoking, chronic stress, poor nutrition, sedentary living; risks often begin early in life, even in fetal development
Obesity: about 2.1 billion overweight worldwide, one third obese; about 5% of deaths; nearly half of world population may be overweight or obese by 2030
Longer lifespans; improved screening and early detection
Serious mental illness increases risk

Four major modifiable behaviors cause most chronic disease: tobacco and ENDS use or secondhand smoke, poor nutrition (high sodium and saturated fat, low fruits and vegetables), physical inactivity, excessive alcohol.

F. Myths and truths (Table 7-1)

Chronic illness usually causes slow, painful, premature death, not sudden death
Most chronic illnesses trace to modifiable risks; eliminating them would prevent over 80% of heart disease, stroke, type 2 diabetes and over 40% of cancers
Interventions are cost-effective even in poor regions
Individual responsibility requires equal access to healthy choices
Affects women and men about equally; almost half of deaths occur before 70
Poor people more likely to develop chronic disease; 80% of chronic disease deaths are in low- and middle-income countries

G. Prevention (CDC risk factors and WHO interventions, Chart 7-9)

Risk factors: hypertension, tobacco and ENDS, overweight or obesity, inactivity, excess alcohol, low fruit and vegetable intake, high sodium and saturated fat
Tobacco: raise prices, smoke-free laws, warnings, ban advertising
Alcohol: raise prices, limit availability, ban advertising
Diet and activity: reduce salt, replace trans fats, public awareness, promote breastfeeding (reduces later obesity)
CVD and diabetes: glycemic and BP control; counsel high-risk patients; aspirin for acute MI
Cancer: hepatitis B vaccine (liver cancer); HPV vaccine and screening (cervical cancer)

H. Characteristics of chronic conditions

Psychological and social issues: identity threats, role changes, body image, lifestyle and work disruption; continuous adaptation
Course: acute, stable, unstable periods, flare-ups, remissions; each phase brings stress
Progression: rapid decline to slow decline to relapsing-remitting
Therapeutic regimens: persistent adherence needed; patients may stop or alter medications because side effects are worse than symptoms or regimens are costly or time-consuming
One condition can lead to others (diabetes leads to visual, cardiac, kidney disease, erectile dysfunction)
Family life: role reversal, lost income, caregiving burden; over 16.6% of US adults are caregivers (stress, depression, fatigue)
Home is the center of care; hospitals and clinics are backup
Self-management: each patient learns how their own body responds
Collaborative process with many professionals
Costs and lost income; ACA ended lifetime limits and preexisting-condition denials
Ethical issues: costs, scarce resources, quality of life, withdrawing life support
Living with uncertainty even in remission

I. Implications of managing chronic conditions

Prevention first; then managing symptoms, avoiding complications, preventing other acute illness
Quality of life often overlooked; exercise maintains function
Managing more than one chronic condition; one may aggravate another
Hiring and supervising caregivers
Patients often report inadequate care, information, counseling - nurses coordinate and advocate

J. Special populations

Veterans: Gulf War Illness and chronic multisymptom illness (fatigue, depressed mood and cognition, musculoskeletal pain for over 6 months in at least two of three categories); possibly toxin exposure; take them seriously
Older adults: number expected to more than double to 98.2 million by 2060; 85 and older to triple to 19.7 million; 127 women per 100 men over 65; 3 in 4 older Americans have MCC; older adults’ care is 66% of health spending, 3-5 times the cost of younger people; 28% live alone, almost half of women 75 and older live alone, many in poverty

V. Nursing Care of Patients With Chronic Conditions

Direct care: assessment, wound care, medication management, education, technical tasks - allows patient to remain home
Supportive care: monitoring, education, counseling, advocacy, referrals, case management; early detection of complications prevents hospitalization
Holistic: physical, emotional, social; respect patient choices even when unwise; care without ridicule or refusal regardless of behaviors (smoking, overeating, nonadherence)
Teaching: prevention throughout life; interactions among multiple conditions; well-informed patients manage symptoms and seek care earlier; newly diagnosed patients may need time before teaching; do not assume long-time patients know how to manage; recognize patients’ expertise about their own bodies; tailor to literacy, language, alternative formats, interpreters
Continuing care: collaborative; teach essentials in hospital; arrange home care before discharge; home health nurse reassesses adaptation
Community and global: screening (BP, diabetes, stroke risk), group education; remind patients about routine health promotion and screening
Telehealth: useful for rural patients, monitoring, counseling, education
Transitional care for MCC, impaired cognition and physical limits, complex therapies, frailty: transitional care nurse coordinates, sets goals, home visits, phone support
Consider age, gender, culture, cognitive and sensory limits, health literacy, genetic risk; involve family in cultures that rely on family support

High-Yield Numbers

Developmental disability onset before 22; intellectual disability before 18
Disability: 1 in 4 US adults (61 million); over 1 billion (15%) worldwide
Over 46% with one disability have another
Employment 19.1% vs 65.9%; poverty 29.6% vs 13.2%
Chronic disease: 3 months (NCHS) or 1 year (CDC)
6 in 10 US adults have a chronic disease; half have one or more, 1 in 4 two or more; 3 in 4 over 65 have MCC
86% of health spending relates to chronic disease; 5 or more conditions = 41% of spending
Eliminating risk factors prevents over 80% of heart disease, stroke, type 2 diabetes and over 40% of cancers
SSDI requires 40 quarters of work
Over 41% of post-9/11 veterans have disabilities
Gulf War Illness: symptoms over 6 months

Priority Nursing Actions

Speak directly to the patient, at eye level, with people-first language
Provide a professional interpreter (not family) at the facility’s expense
Ask before helping; never move a mobility aid or pet a service animal without permission
Arrange the room so the patient can stay independent (bed height, devices within reach)
Never skip recommended screening because of disability
Screen for abuse and depression
Assess knowledge even in long-standing chronic illness; tailor teaching formats
Arrange home services and accessible follow-up before discharge
Support family caregivers; assess caregiver strain