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Cited by 129Cancer survivorship and carePalliative and Oncologic CarePalliative Care and End-of-Life Issues

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

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van Roij, Janneke, Brom, Linda, Youssef-El Soud, Maggy, van de Poll-Franse, Lonneke, Raijmakers, Natasja J. H.·2019·Supportive Care in Cancer
DOI 10.1007/s00520-018-4437-1PMC PMC6394690
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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.

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  • 10 studies emphasized the need of enhancing social support by reinforcing support networks and facilitating access to support groups and associations.

    “Among the strategies described, 10 studies [28,29,31,32,36,39,41,50,54,57] emphasized the need of enhancing social support by means of reinforcing the support networks and facilitating access to support groups and associations.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [54]

    The Discussion’s Practical implications section recommends informing social relations about effective ways to help, which may strengthen support systems and reduce isolation. The Perceived social support section discusses mixed experiences of peer support, but the paper does not recommend facilitating access to support groups or associations. The figure of 10 studies describes the citing paper’s group of sources, not a finding attributed to this individual study. (LLM, conf=0.86)

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  • 10 studies described how the patients' disease process has affected the social interaction of caregivers, who manifest great difficulty in reconciling their role as caregivers and the development of other daily activities, highlighting deterioration of working conditions.

    “With regard to social aspects, 10 studies [24,25,27,31,32,41,49,53,54,55] described how the patients’ disease process has affected the social interaction of caregivers, who manifest a great difficulty in reconciling their role as caregivers and the development of other daily activities, highlighting the deterioration of working conditions.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [54]

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Cited by

Sorted by citations

Authors
van Roij, J., Brom, L., Youssef-El Soud, M., van de Poll-Franse, L., & Raijmakers, N. J. H.
Affiliations
Netherlands Comprehensive Cancer Organisation (NL)
ORCID
Venue
Supportive Care in Cancer
Publisher
Springer Science and Business Media LLC
Published
2018-09-13
Volume
27
Issue
4
Pages
1187-1195
ISSN
  • 0941-4355 (ISSN-L)
  • 1433-7339
DOI
10.1007/s00520-018-4437-1
PMC
PMC6394690
OpenAlex
W2890261792
Cited by
129
References
5
Citations by year
2026: 6 · 2025: 33 · 2024: 26 · 2023: 23 · 2022: 20 · 2021: 10 · 2020: 7 · 2019: 3
FWCI
1.88
Type
journal article
Language
en
Open access
Licence
Locations
  • Supportive Care in Cancer (publishedVersion, cc-by-nc)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by-nc)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • Research portal (Tilburg University) (submittedVersion, other-oa)
  • Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
Funders
Roparun Foundation
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Keywords
advanced cancer, informal caregivers, social consequences, social isolation, social engagement, social identity, social networks, social support, patient experience
MeSH terms
Adult, Aged, Awareness, Female, Humans, Male, Middle Aged, Neoplasms, Netherlands, Social Identification, Social Support, Socioeconomic Factors, Caregivers, Focus Groups, Disease Progression, Qualitative Research, Social Participation, Social Networking

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