Informal caregivers who take care of persons of working age with disability experiences of biographical disruption

Abstract

Serious chronic illness or trauma could cause a disability which leads to biographical disruption. Not only a person who has experienced threshold health situations but also his/her family members undergo biographical disruption. Based on the Mike Bury concept of biographical disruption, and the analysis of 12 semi structured interviews with informal caregivers and experts, this article aims to present how informal caregivers of working age relatives with disability experience biographical disruption, and how they try to overcome it. The results of the research reveal that informal caregivers also experience the serious illness and/or disability of a family member as a biographical disruption, as they have to realise and understand that their loved one’s life trajectory is radically changing, that the plans and dreams they had are not destined to come true, and that they have to reconstruct family routines and rituals, the majority of which are aimed at meeting the complex needs of the family member who has acquired a serious illness and/or disability. Family members must take the role of informal caregiver for which they re not always ready. How informal caregivers will experience biographical disruption is related to factors such as age at which family member became ill, and the course and prognosis of an illness. As the health and independence of the relative deteriorate, the process of informal care intensifies, with informal carers putting their other responsibilities, and even needs, aside. To overcome biographical disruption, or reduce its effects, informal caregivers must mobilise the range of resources. The results of this research show that informal carers first try to cope with difficult situations on their own, and then turn to the support resources of informal networks for emotional, financial, informational and practical support to facilitate the caring process. The formal psychosocial support system in Lithuania is still difficult for informal carers to access, due to a lack of information and a lack or inaccessibility of services focused on meeting the needs of informal carers. Focusing only on informal resources without adequate access to formal resources makes it difficult for informal carers to cope with the consequences of biographical disruption, as informal resources are often limited and insufficient. The research was carried out as a part of the “YoungCare – Relief for Younger People in Need of Care and their Informal Carers” project
(Nr. 2022-1-DE02-KA220-ADU-000086558).