The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers

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.Electronic supplementary materialThe online version of this article (doi:10.1007/s11764-017-0628-x) contains supplementary material, which is available to authorized users.

From shaky grounds to solid foundations: A salutogenic perspective on return to work after cancer

“…Our finding regarding the overarching theme of 'uncertainties' is consistent with that of Shilling et al [33] with caregivers, i.e. uncertainties related to lack of control over the disease trajectory and to limitations in the ability to make plans for a future RTW were crucial obstacles for cancer survivors.…”

“…Studies showed that financial worries and reduction in income are common among cancer survivors and can generate uncertainty about the future [33,46]. Owing to the relatively generous public welfare benefits in Norway, the participants in our study managed to maintain an adequate income during and after treatment.…”

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

“…The influence on career aspiration and progression were not addressed at all; for example, the opportunity cost of a missed promotion at work [ 9 ]. Caregivers experience a sense that their own life is suspended, ‘on hold’ in some way; that the uncertainty around the length and quality of the patient's survival affects wide-ranging areas of life [ 10 – 13 ]. It is vital that this lack of control and altered sense of agency is better captured in caregiver outcome measures.…”

Development and validation of the patient roles and responsibilities scale in cancer patients

“…With maintenance therapy, patients may face a trade-off between the putative extension and quality of that survival [ 3 ]. Uncertainties about likely survival benefit can leave patients and their families unable, or unwilling to make plans for the future [ 4 ].…”

“…Furthermore, QoS is not a static concept; it includes recognition that the relative importance of different dimensions will change across the disease trajectory. As such we designed the PROACT programme of work (Patient Reported Outcomes impact of Age and Carer role demands associated with Treatment) recognising that patients and their families are continually adjusting to a fluid situation whilst trying to maintain their ‘real world’ roles and responsibilities beyond cancer, such as caregiving responsibilities for a spouse or children/grandchildren, jobs and financial responsibilities [ 4 ].…”