Caregiver role development in chronic disease: A qualitative study of informal caregiving for veterans with diabetes

Abstract

Objective Support for chronic conditions such as diabetes from friends and family positively influences health management and outcomes, but limited data exist on how and why caregivers assume specific support roles for otherwise independent aging adults. We conducted a qualitative study to examine the nature of caregivers’ roles in supporting Veterans’ management of a chronic condition and caregivers’ reasons for assuming those roles, using Type 2 diabetes as an example. Methods Thirty-two interviews were conducted with Veterans with Type 2 diabetes (n = 20) and their caregivers (n = 12). Two coders independently analyzed interview transcripts using a thematic analysis approach. Results Three central roles of caregivers in diabetes management were described: direct care support, memory support/care organizer, and advocate. Three explanations for assuming caregiving roles emerged: changes in patient health, natural evolution of family roles, and caregivers’ health care experience or training. Discussion Understanding what roles caregivers fill and why is critical to designing services to support caregivers in helping improve chronic health condition management for aging adults.

‘You become their advocate’: The experiences of family carers as advocates for older people with dementia living in residential aged care

“…It has been argued that family members are more likely to be advocates because they have extensive knowledge of their relative and therefore notice changes in health status (Gaugler et al, 2009). Family carers of older people with dementia living in the community have also reported the need to take on an advocacy role (Fields et al, 2020; Womack et al, 2017).…”

Adopting the Role of Caregiver of Chronic Patients: Specific Situation Theory

“…Likewise, the transition flow is characterized by a period of confusion and denial regarding the task; it then presents a chaotic phase in which the meaning of the task is lost, and disorientation emerges. Finally, a new perspective is found in which the meaning of the task is different and new (46,47).…”

“…The evident transition patterns are unique in each caregiver's experience and are also multiple and sequential because they exert a wave effect over time. Each chronic patient's crisis can pose new challenges and difficulties in the role, with the presence of simultaneous and unrelated patterns, because, in addition to the tasks with their sick family member, family caregivers must do chores inherent to other spheres, such as marriage, work, and development (46)(47)(48).…”

“…Family caregivers frequently display insufficiency in their role, derived from an incorrect definition of their functions, knowledge deficits, inadequate dynamics in their relationships with others, or adverse feelings related to the role. Regarding the functions and knowledge, the caregivers need more education in aspects related to the disease (44,49), household chores, nutrition, reorganization of everyday life, and emotional elements (47,48). The relationship with the rest of the family is affected by the caregivers' isolation, who devote most of their time, attention, motivation, and energy to the care task (45,48,50).…”

“…The relationship with the rest of the family is affected by the caregivers' isolation, who devote most of their time, attention, motivation, and energy to the care task (45,48,50). Regarding the feelings, family caregivers significantly impact their emotional sphere, which triggers depression, anxiety, and stress (47,51), in addition to burden and adverse feelings such as uncertainty, anguish, pain, despair, fear, and hopelessness (50,52).…”