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

• DOI: 10.1007/s11764-017-0628-x
• Publication Date: 2017-07-18T08:37:25Z
• Authors: Valerie Shilling; Rachel Starkings; Valerie Jenkins; Lesley Fallowfield
• Keywords: Health Services Research

The aim of this study was to explore the impact extended cancer survival on broader aspects life and wellbeing such as occupational, financial family for patients with advanced their nominated informal caregivers. In-depth qualitative interviews were transcribed verbatim. A thematic framework developed from an initial process open coding tested iteratively new data collected. Twenty-four patient-caregiver dyads ovarian (9), melanoma (9) or lung (6). Patients aged 39–84 (median 62 years) caregivers 19–85 54 years). Caregivers partners/spouses (15), children (5), siblings (2) friends patients. One particular theme, 'uncertainty', encompassed many issues planning future, providing one's family, employment finances. Uncertainties related timescale trajectory disease lack control ability make plans. There marked age effects. Accounts within same dyad often differed rarely discussed concerns each other. Both challenged by uncertainties around living a defined trajectory. This impacted diverse areas life. Although distressing, seldom these Uncertainty is recurrent issue survivors families impacting broad lives move forward; however, in together. should be periodically, together, healthcare professionals could facilitate discussions. use one more 'trigger questions' clinic appointments may provide opportunity start dialogues.