Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study

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Abstract

Purpose

Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.

Methods

Seven focus groups and seven in-depth semi-structured interviews with patients ( n = 18) suffering from advanced cancer and their informal caregivers ( n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.

Results

Social consequences were categorized in three themes: “social engagement,” “social identity,” and “social network.” Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.

Conclusions

Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.

Electronic supplementary material

The online version of this article (10.1007/s00520-018-4437-1) contains supplementary material, which is available to authorized users.

Related collections

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Author and article information

Contributors

Janneke van Roij: 0031 088 234 6241 , j.vanroij@iknl.nl

Journal

Journal ID (nlm-ta): Support Care Cancer

Journal ID (iso-abbrev): Support Care Cancer

Title: Supportive Care in Cancer

Publisher: Springer Berlin Heidelberg (Berlin/Heidelberg )

ISSN (Print): 0941-4355

ISSN (Electronic): 1433-7339

Publication date (Electronic): 13 September 2018

Publication date PMC-release: 13 September 2018

Publication date (Print): 2019

Volume: 27

Issue: 4

Pages: 1187-1195

Affiliations

[1 ]ISNI 0000 0004 0501 9982, GRID grid.470266.1, The Netherlands Comprehensive Cancer Organisation, ; PO box 19079, 3501 DB Utrecht, The Netherlands

[2 ]ISNI 0000 0004 0477 4812, GRID grid.414711.6, Department of lung oncology, , Maxima Medical Centre, ; Eindhoven, The Netherlands

[3 ]ISNI 0000 0001 0943 3265, GRID grid.12295.3d, CoRPS - Center of Research on Psychology in Somatic diseases, Department of Medical and Clinical Psychology, , Tilburg University, ; Tilburg, The Netherlands

[4 ]GRID grid.430814.a, Division of Psychosocial Research and Epidemiology, , The Netherlands Cancer Institute, ; Amsterdam, The Netherlands

Article

Publisher ID: 4437

DOI: 10.1007/s00520-018-4437-1

PMC ID: 6394690

PubMed ID: 30209602

SO-VID: 594dc816-67ea-4d96-8e0c-ee27626a95ab

License:

Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial 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.

History

Date received : 14 March 2018

Date accepted : 21 August 2018

Funding

Funded by: Roparun Foundation

Custom metadata

ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: social well-being,social consequences,advanced cancer,palliative oncology,informal caregivers,focus groups

Data availability: