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

PURPOSE: The 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. METHODS: In-depth qualitative interviews were trans...

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Autores principales: Shilling, Valerie, Starkings, Rachel, Jenkins, Valerie, Fallowfield, Lesley
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5602354/
https://www.ncbi.nlm.nih.gov/pubmed/28721677
http://dx.doi.org/10.1007/s11764-017-0628-x
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author Shilling, Valerie
Starkings, Rachel
Jenkins, Valerie
Fallowfield, Lesley
author_facet Shilling, Valerie
Starkings, Rachel
Jenkins, Valerie
Fallowfield, Lesley
author_sort Shilling, Valerie
collection PubMed
description PURPOSE: The 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. METHODS: In-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. RESULTS: Twenty-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. CONCLUSIONS: Both 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s11764-017-0628-x) contains supplementary material, which is available to authorized users.
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spelling pubmed-56023542017-10-03 The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers Shilling, Valerie Starkings, Rachel Jenkins, Valerie Fallowfield, Lesley J Cancer Surviv Article PURPOSE: The 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. METHODS: In-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. RESULTS: Twenty-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. CONCLUSIONS: Both 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s11764-017-0628-x) contains supplementary material, which is available to authorized users. Springer US 2017-07-18 2017 /pmc/articles/PMC5602354/ /pubmed/28721677 http://dx.doi.org/10.1007/s11764-017-0628-x Text en © The Author(s) 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Article
Shilling, Valerie
Starkings, Rachel
Jenkins, Valerie
Fallowfield, Lesley
The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
title The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
title_full The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
title_fullStr The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
title_full_unstemmed The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
title_short The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
title_sort pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5602354/
https://www.ncbi.nlm.nih.gov/pubmed/28721677
http://dx.doi.org/10.1007/s11764-017-0628-x
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