The Labor of Caregiving: A Theoretical Model of Caregiving During Potentially Fatal Illness

Abstract

The purpose of this study was to explore the influence that chronic and potentially fatal illness has on the caregiving process over time. Data were collected through in-depth interviews with 26 family caregivers of people experiencing AIDS or advanced cancer over a 4-month period. Constant comparative analysis was used to analyze the data. A substantive theory of family caregiving for people with life-threatening illnesses was developed around a core organizing theme: the labor of caregiving. Four phases emerged: becoming a caregiver, taking care, midwifing the death, and taking the next step. This study validates the taking-care or "tasks" aspect of caregiving, revealing that issues and tasks vary in each phase of caregiving. The key role of the caregiver in contributing to the quality of life of the ill person was apparent in the initial phase of an illness as well as at the time of death.

Between worlds: the experiences and needs of former family carers

“…These conclusions are supported in the work of those who have asserted that the death of the care receiver results in the carer experiencing feelings of loneliness, as well as loss of purpose and identity (Haley et al, 2002;Jenkinson, 2004) and that the post-caring/care transitions phase is characterised by the removal of medical equipment (Brown & Stetz, 1999) and a reduction in contact with formal services (Means et al, 2003). Although such literature was theoretical and anecdotal rather than empirical in nature, this study confirms the assertions therein.…”

“…Nevertheless, this also represents a significant loss to the family, especially the primary carer (Haley et al, 2002;Means et al, 2003). The beginning of the death transition is characterised by a reduction in contact with formal services, as well as the removal of specialist equipment from the home and organising financial matters (Brown & Stetz, 1999). Although Brown & Stetz (1999) contribute substantially to the field, former carers were not the sole focus of the study, but rather one of many aspects of caring that were considered during the research.…”

“…All models view the post-caring/care transitions phase as a crucial element of the total caring experience. The Brown & Stetz (1999) and Aneshensel et al (1995) models see death rather than care facility placement as the end-point of the caring career. Such a view may underestimate the impact of relinquishing the primary carer role on identity, sense of guilt and monetary income.…”

“…It is recognised that one of the most significant transitions in this career is the movement into the post-caring/care transitions phase (Davies & Nolan, 2004;. This section will firstly present stage models that encompass all elements of the caring career (Aneshensel et al, 1995;Brown & Stetz, 1999;Lindgren, 1993;Nolan et al, 2003). Following this, theoretical models that focus exclusively on the post-caring/care transitions phase (Davies & Nolan, 2004;Larkin, 2009) will be discussed.…”

“…Bereavement Again, this model was developed from research on dementia carers, but from a three-year longitudinal study which enabled the changes in the carer career to be documented as they occurred. Brown & Stetz (1999) outlined four phases involved in caring for a person with a potentially fatal illness. These stages were; becoming a carer, taking care, 'midwifing' the death and taking the next step.…”