Abstract
PurposeThe aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers.MethodsIn-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected.ResultsTwenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39–84 (median 62 years) and caregivers 19–85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other.ConclusionsBoth patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other.Implications for Cancer SurvivorsUncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues.
Highlights
Progress into the biology underpinning many cancers and precision medicine has led to a dramatic increase in patients living with advanced cancer as a chronic condition
When patients are living with advanced cancer, with no curative treatment, how do they and their families adjust to the uncertainty that surrounds the length and quality of their survival? some studies have highlighted how cancer affects employment, [2, 3], finances [4,5,6] and social roles and
We present some of the qualitative findings from the first stage of measure development in the PROACT study; in-depth, semi-structured interviews with patients and their informal caregivers to inform item development
Summary
Progress into the biology underpinning many cancers and precision medicine has led to a dramatic increase in patients living with advanced cancer as a chronic condition. The management of these patients can be complex with some difficult decision-making around offering repeated further lines of treatment after progression that might control cancer but affect the quality of patients’ lives [1]. As increasing numbers of patients are living with, and living longer with advanced cancer, there is growing recognition of the importance of the quality of this survival: how the broader aspects of their lives are managed and impacted across the disease trajectory. Informal caregivers frequently provide a significant amount of care and support for patients [13, 14] often alongside the other social and occupational roles and additional caregiving responsibilities that they may have [15,16,17,18]
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