The meaning of informal BMT caregiving
Objectives. The aims of this qualitative descriptive exploratory study were to (1) describe informal caregiver commitment in informal caregiving; (2) describe caregiver expectations in informal caregiving; (3) describe caregiver role negotiation in informal caregiving, (4) identify other important caregiver energy sources; and (5) refine the conceptual model of Informal Caregiving Dynamics based on the study results. Methods. Participants were 40 informal caregivers of blood and marrow transplant patients being treated at a comprehensive cancer center who told their caregiving stories in an audiotaped dialogue. Patients consented to have their caregivers contacted about the study and to have information collected from their medical records. To address the specific aims, the dialogues were analyzed for major elements and themes with an adaptation of the descriptive exploratory method. Findings. Commitment was redefined as enduring caregiver responsibility that inspires life changes to make the patient a priority. Commitment calls caregivers to supportive presence and self-affirming loving connection with the patient. Expectation management was defined as envisioning the future and yearning to return to normal. Expectation management includes taking one day at a time, gauging behavior from past experiences with the patient, and reconciling anticipated to actual treatment twists and turns. Role negotiation was defined as appropriate pushing by the caregiver toward patient recovery and independence after getting a handle on complex care that demands shared responsibilities. Role negotiation happens as caregivers determine action with attention to patient voice and vigilantly bridge communication between patients and the health care system. Three additional energy sources of caring for self, gaining insight, and connecting with others, were identified and added to the model as underpinnings for commitment, expectation, and role negotiation respectively. Discussion and implications. Methods of supporting informal caregivers that deserve investigation include consistent acknowledgment of caregiver contribution to patient care; provision of clear, present-focused information; opportunities to reconcile expectations with outcomes by developing a coherent caregiving story; and encouragement to maintain good health habits while caregiving. Patient contribution to the dynamics of caregiving warrants future research attention as does change in energy sources over time as a caregiver.
Williams, Loretta, "The meaning of informal BMT caregiving" (2005). Texas Medical Center Dissertations (via ProQuest). AAI3166188.