How Does a Family Caregiver’s Sense of Role Loss Impact the Caregiving Experience?

Family caregivers reportedly have a powerful sense of role loss, which is felt when one senses a change in role or responsibility, relationship distancing, or a changed asymmetry. Little is known about the impact it has on the caregiving experience, so the purpose of this study was to clarify this in three distinct settings: when an individual’s primary role changed to the caregiver role after the start of caregiving; when their primary role was other than the caregiver role after this start; and when their primary role was the caregiver role before caregiving started. Sixty-six individuals responded to an online survey, and a framework method was employed to organize the collected data and uncover themes for analysis. Our findings shed light on the sense of caregiver role loss and pointed to the possibility of generating it when family caregivers rotate through held roles and the use of it as a tool to maintain or regain a sense of personal choice in life and self-priority. Our study is probably the first to analyze this phenomenon in different caregiving settings based on an individual’s primary role and role transitions and brings to light a new perspective of the phenomenon by understanding how it arises, its nuances, and its impact on the caregiver’s experience.