Caregiving for two parents affected by chronic dementia was the original impetus for this study. My negative experiences led to a quest for insight and solutions through volunteer, professional and academic pursuits. It culminated in this exploration of caregivers' experiences and their decision-making to expose the educational support they need. Caregivers tend to be family members, and overwhelmingly women. Studies from various disciplines confirm that caregivers need educational support to make decisions. Yet, little is known about what type of educational support they need and how it is to be provided. Caregivers' voices are seldom included in research and they are frequently blamed for the problems they confront. This qualitative study honours caregivers' voices. Through in-depth semi-structured interviews, the perspectives of five women form my primary source of data. Personal documentation, archival materials, and interviews with experts in the field supplement these data. To analyze the data two complementary analytic approaches are used: categorization and contextualization. A categorization approach organizes the data into conceptual themes. These themes include activities of multitasking, being locked into a state of heightened alert, interpreting the disease, and managing care. These activities reveal physical and psychological suffering. Contextualization approaches situate the dilemmas the women face in particular contexts. These dilemmas highlight their lack of authority. The analyses indicate that the women engage in a wide range of decision-making and that they need both similar and specific types of educational support. These types of support include (1) lessening their burdens and their frustrations of decision-making; (2) facilitating ethical decision-making; (3) providing information about medical treatments; and (4) assisting with the access to and with the assessment of suitable resources. Overall, caregiving is a ve
| Identifer | oai:union.ndltd.org:LACETR/oai:collectionscanada.gc.ca:QMM.85161 |
| Date | January 2005 |
| Creators | Furlini, Linda |
| Publisher | McGill University |
| Source Sets | Library and Archives Canada ETDs Repository / Centre d'archives des thèses électroniques de Bibliothèque et Archives Canada |
| Language | English |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
| Format | application/pdf |
| Coverage | Doctor of Philosophy (Department of Curriculum and Instruction.) |
| Rights | All items in eScholarship@McGill are protected by copyright with all rights reserved unless otherwise indicated. |
| Relation | alephsysno: 002227228, proquestno: AAINR12844, Theses scanned by UMI/ProQuest. |
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