Abstract
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.
Highlights
Caregiving is an activity directed at a person with a disabling condition or illness unable to care for themselves and with three main objectives: to get things done, to accomplish a sense of health and well-being for the care recipient, and to accomplish a sense of health and well-being for the caregiver [1]
The alteration of relationship with present and future times was clear in the groups; the respondents in Group 27 reported their sense of unpreparedness to provide care to the care recipient, with some mentioning a worry (i.e., TH003) that led to insecurity about what to do and what the future would hold for both the caregiver and the care recipient, as explained by a respondent: “Despair. As for the future of my son and mine
The data for analysis were collected through an online survey and answered by sixty-six individuals
Summary
Caregiving is an activity directed at a person with a disabling condition or illness unable to care for themselves and with three main objectives: to get things done, to accomplish a sense of health and well-being for the care recipient, and to accomplish a sense of health and well-being for the caregiver [1]. The outcomes associated with the activity vary from positive to negative, such as life satisfaction, personal growth through learning opportunities [2], caregiving stress, role captivity [3], objective and subjective caregiver burden [4], less time for other activities, financial pressure, and tiredness [5]. Caregivers are unpaid workers who produce health and may be considered hidden patients of the care recipient’s physician [6]. They are members of the healthcare team caring closest to the care recipient and members of the unit of care, and their concerns, needs, and health must be paid attention to and addressed [7].
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