Caring in Context: Structural factors, burden, and identity adoption for informal caregivers of patients with Alzheimer’s dementia or Chronic Kidney Disease
Zhang, Gregory S.
- Many older patients with chronic illnesses ranging from chronic kidney disease (CKD) to neurodegenerative disorders such as Alzheimer’s dementia rely on family or friends to serve as informal caregivers for them. While there has been research done across multiple fields about individual aspects of caregiving, there is little communication across fields and no real attempt to look at the caregiving... read moreexperience as a whole, and in particular what structural factors influence the wide range of caregiver experiences. I conducted a series of 27 semi-structured qualitative interviews with caregivers of patients with either chronic kidney disease or Alzheimer’s dementia exploring the patient-caregiver relationship, caregiver burden, and identity. I analyzed the interviews using grounded theory, developing a codebook to identify emergent themes. I found that the experience of caregiving is contextual and dependent on factors such as disease type, strength and nature of the interpersonal relationship between patient and caregiver, socioeconomic factors, and temporal context related to uncertainty about the future. In particular, the type of disease and its symptoms and treatment were essential in shaping caregivers’ responses to their situation, especially whether or not caregivers embraced a caregiver identity or not. Variations and combinations of these factors shape caregiver experiences, perceived burdens, and caregiver responses to these burdens.The interactional nature of these contexts mean that theories and models developed by various disciplines may not be suitable to explain the experiences of caregivers. Only research that takes a wide and interdisciplinary look at caregiving can illuminate the experience of informal caregivers, research which I hope this paper demonstrates would be immensely valuable.read less