Many patients to whom nurses provide care have a chronic condition. These chronic conditions can arise from any organ or system in the body. They can be present since birth (e.g., cerebral palsy) or develop at any point during the lifespan (e.g., diabetes, asthma, and blindness). Chronic conditions can be progressive (e.g., muscular dystrophy or dementia) or have periods of exacerbation and remission (e.g., lupus erythematosus or rheumatoid arthritis); occasionally they can resolve or be cured (e.g., some cancers). To clarify terminology, this article uses the term chronic condition rather than chronic illness. Illness implies being sick and needing to recover, and therefore healthcare providers are prone to treat individuals with these conditions as if they are sick. While the individual with a chronic condition may have periods where their condition causes an exacerbation and illness, in general, they are not sick. Rather, they are in their normal state of wellness and should be treated as such.

The term chronic condition is defined as:
A condition that lasts 12 months or longer and meets one or both of the following tests: (a) it places limitations on self-care, independent living, and social interactions; (b) it results in the need for ongoing intervention with medical products, services, and special equipment and resources (Agency for Healthcare Research and Quality, n.d., para 1). Chronic conditions include both chronic illness and chronic physical and mental conditions.

The term ‘chronic condition’ is usually associated with disability. Disability is a term that has many definitions. It is a legal term rather than a medical one and is defined differently by different laws. The Americans with Disabilities Act (ADA) of 1990 has the broadest definition of disability. ADA defines an individual with a disability as someone who “has a physical or mental impairment that substantially limits one or more major life activity,” those with a history or record of an impairment, and those who are perceived by others as having such an impairment (U.S. Department of Justice, Civil Rights Division, para 1). Major life activities are described as “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working” (ADA, 2009, Section 12102 (2) (A)). It also includes chronic changes to organ systems that involve the “immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine and reproductive functions.” (ADA, 2009, Section 12102 (2) (B))

The disability associated with one’s chronic condition is specific to each individual and moves back and forth along the health continuum from mild to severe; rarely does it stay static. Nurses should never assume the level of disability based on the diagnosis; an assessment is needed. Therefore, the nurse’s plan of care must be flexible to accommodate the changing presentation of the condition and how it is affected by aging, the environment (including nutrition), and whether there is the presence of other conditions.

The parameters of disability determine whether one qualifies for insurance coverage for treatments, including Medicare and Medicaid, or can participate in clinical trials, as well as for children who are eligible to receive special education and related services within the elementary and secondary school systems via The Individuals with Disabilities Education Improvement Act (IDEA). This latter law has the narrowest definition of disability based on the category of the condition. The concept of disability is also individualized. Most individuals who wear glasses to help them see better would not consider that a disability, yet others feel very disabled by their loss of visual acuity.

The term handicap should be avoided, as it is a limitation placed on an individual by society or the environment. Individuals are not born with handicaps, nor are handicaps associated with a particular condition. These are barriers or obstacles that interfere with a person’s achievement of goals. Examples would be the absence of curb cuts or ramps into buildings for the person in a wheelchair preventing access to services, or not having a telecommunication device for the deaf, which would interfere with getting one’s questions answered.

One of the most important mandates for nurses from IDEA is person-first language. This means that nurses should refrain from referring to the patient as their disease. We frequently speak of our diabetics, asthmatics, and cystics. The law mandates that we should instead use ‘the patient with asthma,’ the teen with diabetes, and the child with cystic fibrosis. As role models, nurses should be aware of the language they use to refer to patients.

According to the Centers for Disease Control and Prevention (CDC) (2022), 60% of adults have one chronic condition, and 40% have two or more. While the CDC (2021) indicated that 40% of school-age children and youth have a chronic condition, a consensus statement from multiple organizations representing the health needs of children indicated that 25% of children have a chronic condition, such as asthma, food allergy, mental health concerns, obesity, diabetes, and untreated tooth decay; 6% have multiple conditions (American Academy of Pediatrics, 2021). This means that school nurses have a prime responsibility to manage and coordinate care for these children and youth.

Many individuals with chronic conditions are dependent on assistive technology devices to maintain or manage their condition. Whether this is oxygen for the person with chronic lung disease, continuous glucose monitors and insulin pumps for those with diabetes, or multiple mobility devices, nurses are encouraged to remember that there is a person behind all that technology whose needs need to be addressed. Additional examples of technology assistance include those who use communication devices, prosthetics, hearing aids, gastrostomy tube feedings, ostomies, inserted ports, or pacemakers. Interdisciplinary teams are often helpful in coordinating care for those who depend on technology. Be aware that some individuals may be embarrassed by their dependence on technology; creative interventions may be needed to help them adjust to or camouflage their technology so that they and their equipment are safe.

Because of the wide definition of disability and the different ways that having a chronic condition can impact one’s self-concept, be aware that having a disability is a risk factor for one’s mental health. The CDC (2020) reported that adults with disabilities experience frequent mental distress five times more than adults without disabilities. Children who are “different” are more likely to be bullied and ostracized by their peers (Stopbullying.gov, 2020). Society is often unkind to those with disabilities. Social media has had a negative impact by comparing one person to another, allowing cyberbullying, promoting a lack of respect for others and the property of others, and shaming individuals because of their speech or altered coordination. Nurses can have a major role in focusing on the positive. Part of every assessment should be the identification of the patient’s strengths and praising them.

Focusing on the positive is important. Some people refer to disability as a form of diversity. Others stress the ABILITY component of disability. When was the last time you asked the parent of a child or someone caring for a spouse with a chronic condition (no matter their age) the following questions?

1. How is this condition affecting you after years of caring for your child/spouse?
2. What changes have you had to make in your daily life?
3. What preparations have you made for the next few years?
4. What are you doing to take care of yourself?
5. What advice could you give me to help others with this condition?
6. What strengths have you found that you have as a result of having a child/spouse with a chronic condition?
7. When was the last time you asked your patient with a chronic condition (including if that patient is a child) the following?
8. As you have gotten older, what adjustments have you had to make because of your condition?
9. What strengths have you found that you have because of having this condition that you didn’t know that you had?
10. What would you tell another person diagnosed with this condition in order to help them be successful?

Some additional issues to consider when working with patients with chronic conditions:

1. The Visual Analog 1-10 pain scale that is used so frequently in hospitals is not reliable when measuring the degree of chronic pain. Pain scales usually focus on a person’s pain level at that moment, rather than how the pain affects their daily life. Chronic pain is associated with anxiety, fear, and depression (Arbuck & Fleming, 2020). This can interfere with sleep, school/work absenteeism, and inability to participate in social or athletic activities. It is important to know the patient’s baseline level of pain, how it manifests itself, and what is effective in managing it.
2. The family is essential. This includes the medical care needed on a daily basis, the financial impact, and transporting the patient for their needed and often frequent healthcare appointments. The emotional impact on the family can be significant. There may be healthcare providers visiting in the home (sometimes for whole shifts); significant impairments may make it difficult for the caretakers to engage in social networks or find time outside the home to meet their social needs, leading to loneliness; and others living in the home (such as siblings) may be impacted by the restrictions imposed by the person’s disability. Respite care may be essential.
3. Many chronic conditions have long-term sequelae which nurses must continually monitor. The sequelae of diabetes (nephropathy, retinopathy, neuropathy, and poor wound healing) are well known. However, there are other conditions in which secondary diseases may develop. These include those with Down syndrome being at risk for leukemia, those without use of their lower extremities being at risk for osteopenia, and those with cystic fibrosis being at risk for developing CF-related diabetes.
4. Changes in medical science have extended the prognosis for many conditions. Patients who use older sources of information may have significant fears and concerns based on outdated prognoses. It is up to the medical team, including nurses, to educate and correct outdated perceptions.
5. IDEA mandates that children with chronic conditions receive free and appropriate education in the least restrictive environment. This means that children, regardless of their condition, should be in school and participate in all school activities. If they qualify for special education or related services, they are to have an Individualized Education Program developed by an interdisciplinary school team (including the school nurse) and have a transition plan developed by age 16 to help them prepare for their healthcare needs after leaving secondary school.
6. Individuals with multiple chronic conditions and multiple specialists may take multiple medications. Polypharmacy is not only time-consuming and expensive, but it can also be dangerous. The input of a pharmacologist is essential to assure patient safety.
7. Some conditions are known to result in a terminal stage and death. The ability to control one’s last months may result in the development of a Do Not Attempt Resuscitation (DNAR) order. These need to be honored, and attention needs to be given to those in the patient’s environment, including those in the home and school, to help them know what to expect and what to do when death ensues.
8. Remember that all individuals with chronic conditions also need attention paid to their primary care and dental needs.

Focusing on the person and not their chronic condition is essential. Remember that there is a difference between HAVING a disability and BEING DISABLED; individuals with chronic conditions are not their disability. Even though people may be engaging in multiple daily medical procedures (e.g., rehabilitation sessions, glucose checks and insulin administration, pulmonary hygiene protocols, central line cleanings, and pharmacologic management), our patients still have hopes and dreams. Support positive endeavors and acknowledge their strengths. Assure growth and development. Assure that you say to the individual with a chronic condition, as in the immortal words of Fred Rogers , “I like you just the way you are.” (Movieclips, 2018).

References

Agency for Healthcare Research and Quality. (n.d.). Topic: Chronic Conditions. Retrieved August 13, 2023, from https://www.ahrq.gov/topics/chronic-conditions.html

American Academy of Pediatrics. (2021, August). Consensus Statement on the Core Tenets of Chronic Condition Management in Schools. https://downloads.aap.org/AAP/PDF/Consensus%20Statement%20-%20Core%20Tenets%20of%20CCMS%20%202021-08%20.pdf

Arbuck, D., & Fleming, A. (2020, August 4). A Pain Assessment Primer. Practical Pain Management, 20(4). https://www.practicalpainmanagement.com/pain-assessment-primer

Centers for Disease Control and Prevention. (2020). The Mental Health of People with Disabilities. https://www.cdc.gov/ncbddd/disabilityandhealth/features/mental-health-for-all.html

Centers for Disease Control and Prevention. (2022). Chronic Diseases in America. National Center for Chronic Disease Prevention and Health Promotion. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm

Movieclips. (2018). Won’t you be my neighbor? [Video]. YouTube. https://www.youtube.com/watch?v=DqSBqfDgOsQ

Stopbullying.gov. (2020). Bullying and youth with disabilities and special health needs. https://www.stopbullying.gov/bullying/special-needs

U.S. Department of Justice, Civil Rights Division. (2009). Americans with Disabilities Act of 1990, As Amended. https://www.ada.gov/law-and-regs/ada/