The lived experience of an informal caregiver : co-pilot, navigator and passenger

Abstract

The importance of social support, particularly from family members, has been known to contribute towards positive medical outcomes (Hussey, 1998). A literature gap was identified within the context of ‘informal caregivers’, with scholarly texts focusing on informal caregivers of patients suffering from cancer, long-term illnesses, and patients receiving acute care. This study explores the lived experience of informal caregivers of people over 70 suffering from Type 2 diabetes by drawing on the theoretical framework of biographical disruption as defined by Bury (1982) and taking a closer look at the roles informal caregivers assume, the difficulties they face, as well as what resources they draw on. Data was gathered through individual interviews with seven informal caregivers. The data revealed that informal caregivers in this study adopted the roles as identified by Casey et al (2013): navigator, knowledge broker and companion. Beyond these roles, this study was able to identify two additional roles, those of passenger and co-pilot. Together these roles describe the power relations between an informal caregiver and their ward. Difficulties were highlighted in terms of adhering to a daily routine, arising from the informal caregiver’s ward themselves (through the resistance they offered) or by external forces (community nurses’ unpredictable schedules). The element of fear was another theme which emerged strongly when analysing the data related to informal caregivers’ lived experience in facing adversity. It emerged that it was not always possible to work alone, either due to time constraints or simply because some tasks could not be done by the informal caregiver alone. In these cases, family members came into play and helped to shoulder the burden of care. Furthermore, participants found that knowledge was indispensable for providing quality care for their wards and frequently turned to medical professionals as a source of knowledge, whether to boost their own understanding or simply for reassurance.