Living with a rare disease: Why lived experience must shape research

There are many research methods available to psychologists in their efforts to understand, describe, and explain behavior and the cognitive and biological processes that underlie it.

When a person's physical, emotional, intellectual, social development or spiritual functioning is compromised, this deviation from a healthy normal state is called illness. Illness creates stress that in turn harms individuals. Irritation, anger, denial, hopelessness, and fear are behavioral and emotional changes an individual experiences in the phases of illness. A variety of factors influence a person's health and well-being.
For instance, risk factors are connected to illness, disability,...

The factors influencing the health-illness continuum can be internal or external and may or may not be under conscious control. They are related to the following eight human dimensions, and each dimension is interrelated to one other.

The meaning of illness is individualized to each person who experiences an alteration in health. In contrast, disease is a medical term indicating a pathological change in the structure and function of the body or mind. It is a condition that has specific symptoms and boundaries.
An illness is a response to a disease in which the person's level of functioning is changed compared with a previous level. The general classification of illness includes acute and chronic.
Acute illness is severe and...

Health is a condition of the body, mind, and spirit where an individual remains free from illness. Similarly, wellness is an active state, including living a lifestyle that promotes physical, mental, and emotional health. Physical health is critical for the overall well-being and can be affected by lifestyle, activity level, diet, and behavior. The highest attainable standard of health is a fundamental and universal human right. Consider Lisa, a fifteen-year-old born with congenital...

Documentation in long-term care facilities and home healthcare settings is crucial for ensuring continuous, coordinated, and comprehensive care for patients. Each setting has its specific documentation processes and tools:
Long-Term Care Facilities