Terms

Caregiver: A person who provides support for another individual living with disabilities who might have a broad range of needs. They can be “family, kin, and grandparent caregivers” or direct care workers. A family, kin, or grandparent caregiver is someone who cares for members of their family of origin, or for their family of choice. A direct care worker provides caregiving support in home and community-based settings as part of their paid employment.9

Cognitive dysfunction or impairment (aka “brain fog”): Deficits in attention and concentration, verbal and nonverbal learning and recall, short-term and working memory, visual and auditory processing, problem solving, processing speed, and motor functioning. This is a symptom that many, although not all, people with Long COVID experience.

Contextual support: Other factors that contribute to the intensity and nature of Long COVID’s impact on a person’s life. Also referred to as “social determinants of health,” these are conditions that affect a wide range of health, functioning, and quality-of-life outcomes and risks. In this report, contextual support describes a range of resources that may or may not be available to someone, and barriers to health care, support, and overall living stability.

Disability insurance: Disability insurance is a form of insurance that replaces lost income for someone with psychological disorders or an injury, illness, or condition that causes them physical impairment or incapacity to work. It ranges from paid sick leave, short-term disability benefits (STD), and long-term disability benefits (LTD) provided by federal programs from the Social Security Administration, some state-sponsored plans, and private, paid programs from commercial insurers.

Human-centered design (HCD): A creative approach to problem solving that centers the process and solutions around the people and communities who are impacted. Using qualitative research, this approach humanizes the problems at hand by viewing lived experiences and perspectives as valuable and necessary in solving the problems, and can augment clinical and public health research and initiatives.

Infection-associated chronic illnesses: Illnesses that include a patient history of infection by viral or bacterial pathogens followed by long-lasting and often debilitating symptoms including severe fatigue, cognitive impairment, and multi-organ dysfunction. Examples of infection-associated chronic illnesses include: Long COVID or post-acute sequelae of COVID-19, myalgic encephalomyelitis/chronic fatigue disease (ME/CFS), persistent or post-treatment Lyme disease, and multiple sclerosis.