Words matter. The language we use to describe the human experience is essential to understanding individuals' lived experiences and how we can best care for their well-being. Take the words formal and informal, for example. The word formal suggests official, proper, qualified, while informal suggests casual, unofficial, easy. Imagine then describing a group of individuals as unofficial, that is, as an unofficial person involved in the daily intense work of taking care of a loved one with a chronic or life-limiting illness. Then imagine trying to course correct a linguistic norm. This is the tipping point that I, as a caregiving scientist, am now trying to influence.
No takes yet. Share an insight, caveat, or question.
Allison J. Applebaum (2022) studied this question.
Synapse has enriched 5 related papers. Consider them for comparative context: