"Life Without Symptoms" or "Being Able to Enjoy Life": What does it Mean to be "Well" After Cancer?

Abstract

Objective: To achieve wellness in cancer survivorship, researchers and clinicians need a better understanding of what it means to live "well", from the perspective of cancer survivors themselves.

Methods: Australian and UK cancer survivors (N = 376) diagnosed in the previous five years, were asked "What does it mean to be well?", with an open-ended text response. Responses were coded using content analysis. Demographics, time since diagnosis, coping style and symptom level were also assessed.

Results: Descriptions of what it meant to be "well" were coded as absence-focused (living without negative impacts of illness, 32.7%) or presence-focused (living with health, function, or wellbeing, 37.8%). A further 29.5% of responses contained both elements. Lower symptom level and higher use of a fatalism coping style were associated with presence-focused definitions of being well.

Conclusions: More meaningful conversations with cancer survivors about their goals for care would be facilitated by a better understanding of what it means to them to be "well". As symptoms change over the course of survivorship, it may be necessary to re-examine each survivor's goals of care.

Keywords: Cancer; Patient-centred care; Survivorship; Wellness.