Uncertainty about the future for patients with advanced cancer and their informal caregivers: A qualitative view.

Abstract

218 Background: In the PROACT study, we developed two scales measuring wide-ranging life impacts of cancer and treatment for patients (pts) and caregivers (cgs). Qualitative work in the development phase produced rich data on the concerns of both groups. Here we explore one specific topic, uncertainty, and contrast pts' and cgs' experience. Methods: In-depth qualitative interviews with pts with advanced cancer and their informal cgs about the impact of extended cancer survival on broader aspects of life and well-being. Interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: We interviewed 24 pt-cg dyads with advanced ovarian (9) melanoma (9) or lung cancer (6). Pts were aged 39-84 (median 62 years), cgs 19-85 (median 54 years). Cgs were pts’ partners/spouses (15), children (5), siblings (2), and friends (2). 20 major themes and 33 sub-themes were identified. One concerned the uncertainty when planning for the future and encompassed issues such as providing for one’s family, employment and finances. For both groups uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans, resulting in a life lived day-by-day. Some felt it would be easier to have a definite timeframe (about death) and struggled with accepting that no one could predict what was going to happen and when. There were marked age effects. Differences existed between the groups: pts were concerned with their family’s emotional and financial wellbeing while cgs expressed a lack of control over their own futures and a sense of life "being on hold." These thoughts were often accompanied by guilt. Accounts from within the same dyad often differed and pts and cgs rarely discussed concerns with each other. Conclusions: Both pts and their informal cgs are challenged about coping with death but equally about coping with life and the lack of a defined trajectory. This impacted many areas including employment and general planning for the future. Dyads seldom discussed these concerns so might benefit from professional help aimed at facilitating open discussion together.