ArticleJournal of cancer survivorship : research and practice2017
The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers.
Article in Journal of cancer survivorship : research and practice, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers.
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Who cites it
47 citing papers in PubMed, 76 citations in OpenAlex.
- Psychometric properties of the Brief Mishel Uncertainty in illness scales for patients with advanced cancer and their family caregivers.BMC psychology · 2025Trial
- Acceptability of My Ten: a physical activity intervention for family caregivers of people with advanced cancer.BMC palliative care · 2026Article
- Turning Points in Prognostic Uncertainty Across the Disease Trajectory For Emerging and Young Adult Caregivers of a Parent with Advanced Cancer.SSM. Qualitative research in health · 2026Article
- Echoes of the burdened souls: psycho-social and spiritual turmoil in advanced cancer patients receiving palliative care.BMC palliative care · 2026Article
- Impact on Quality of Life and Psychological Dimensions in Caregivers of Melanoma and Sarcoma Patients: A Scoping Review.Cancers · 2026Review
- Parental cancer caregiving in emerging and young adulthood: the impact of sibling dynamics on the caregiving experience.Journal of health psychology · 2026Article
- Qualitative dyadic analysis in care partnership research: a scoping review.BMC medical research methodology · 2025Article
- Associations of Financial Toxicity with Employment Concerns and Cancer-Related Distress: A Cross-Sectional Survey among Korean Working-Age Cancer Survivors.Cancer research and treatment · 2025Article
- Fear of Cancer Recurrence as Reminder About Death: Lived Experiences of Cancer Survivors' Spouses.Omega · 2025Article
- Developing the Meaning-Centered Program for Chinese Americans with Advanced Cancer: Applying Cultural Adaptation Frameworks.Asian American journal of psychology · 2024Article
- Echoes of Support: A Qualitative Meta-Synthesis of Caregiver Narratives in Lung Cancer Care.Healthcare (Basel, Switzerland) · 2024Review
- Article
- The impact of caregiver burden on quality of life in family caregivers of patients with advanced cancer: a moderated mediation analysis of the role of psychological distress and family resilience.BMC public health · 2024Article
- What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Mediating and Moderating Effects of Uncertainty on the Relationship between Family Function, Self-Care, and Depression among Blood Cancer Survivors.Behavioral sciences (Basel, Switzerland) · 2024Article
- Understanding the role of parents' information sharing and withholding on emerging and young adults' caregiving and coping during their parents' advanced cancer.Journal of psychosocial oncology · 2024Article
- Correlation Between Illness Uncertainty in Caregivers of Patients with Liver Cancer, Their Coping Styles, and Quality of Life.Journal of multidisciplinary healthcare · 2024Article
- The intentional pursuit of everyday life while dying: A longitudinal qualitative study of working-aged adults living with advanced cancer.Palliative medicine · 2023Article
- Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care and support of patients in the UK.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Article
- A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers' Experiences during the COVID-19 Pandemic.International journal of environmental research and public health · 2023Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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 SURVIVORS: Uncertainty 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.