Whatever it takes: informal caregiving dynamics in blood and marrow transplantation.
OBJECTIVE
To describe the dynamics of commitment, expectations, and negotiation from the perspective of caregivers of patients undergoing blood and marrow transplantation (BMT).


METHODS
Descriptive, exploratory, qualitative methodology.


METHODS
Comprehensive cancer center in a major southern U.S. city.


METHODS
40 caregivers of patients undergoing BMT.


METHODS
Story theory guided audiotaped dialogues with caregivers.


METHODS
Commitment, expectations, and negotiation.


RESULTS
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).


CONCLUSIONS
Commitment, expectation management, and role negotiation sustain informal caregivers in their role.


CONCLUSIONS
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.
Williams
Loretta A
LA
Department of Symptom Research, University of Texas M.D. Anderson Cancer Center, Houston, TX, USA. lowillia@mdanderson.org
D000223:Adaptation, Psychological; D016026:Bone Marrow Transplantation / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D004644:Emotions; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D036102:Peripheral Blood Stem Cell Transplantation / Q000451:nursing*; D036301:Qualitative Research; D012941:Social Responsibility; D012944:Social Support