Whatever It Takes: Informal Caregiving Dynamics in Blood and Marrow Transplantation

Abstract

To describe the dynamics of commitment, expectations, and negotiation from the perspective of caregivers of patients undergoing blood and marrow transplantation (BMT). Descriptive, exploratory, qualitative methodology. Comprehensive cancer center in a major southern U.S. city. 40 caregivers of patients undergoing BMT. Story theory guided audiotaped dialogues with caregivers. Commitment, expectations, and negotiation. Commitment is an enduring responsibility that encourages supportive presence, inspires life changes to make the patient a priority, and leads to a self-affirming, loving connection. Expectations are clarified as expectation management, which is envisioning the future and yearning to return to normal, taking one day at a time, gauging behavior from past experiences, and reconciling treatment twists and turns. Role negotiation is appropriate pushing by a caregiver toward patient independence after getting a handle on complex care and attending to patient voice (patient preferences and wishes). Commitment, expectation management, and role negotiation sustain informal caregivers in their role. Acknowledging caregivers' contributions, giving focused information as needed, and providing a safe environment in which to build coherent caregiving stories can assist caregivers. Research is needed to confirm the effectiveness of interventions with caregivers and to understand patients' role in the dynamics of informal caregiving.