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advanced cancer, family caregiver, qualitative research, surrogate decision making



  1. Meeker, Mary Ann DNS, RN


Helping a family member who has cancer is a multifaceted responsibility. Forty adult surrogate decision makers for a family member experiencing advanced cancer were recruited for prospective interviews over the patient's care trajectory. Participants were those who would be responsible for healthcare decisions if the family member with cancer lost decision-making capacity. Our purpose was to examine how participants acquired and perceived their role and how they sustained themselves to carry out the role. Findings revealed that participants did not distinguish between their surrogate decision-making role and their broader care management role. Narratives of these family care managers revealed strategies they developed to help them carry out their role in ways aligned with their values and to steady themselves to avoid becoming overwhelmed. Three pairs of divergent strategies contributed to participants' capacity to meet the demands of the role over time. These paradoxical strategies included putting the care manager's own life on hold/maintaining essential personal activities, taking one day at a time/planning ahead, and being intentionally tolerant/setting limits. In addition to use of these stabilizing strategies, participants found that having a trusted other to talk with about their uncertainties was critical to sustaining them in their care management role.