Social consequences of advanced cancer in patients and their informal caregivers

A qualitative study

J. van Roij, L. Brom, M. Youssef-El Soud, L.V. van der Poll-Franse, N.J.H. Raijmakers

Research output: Contribution to journalArticleScientificpeer-review

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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.

Conclusion
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.
Original languageEnglish
Pages (from-to)1187-1195
JournalSupportive Care in Cancer
Volume27
Issue number4
DOIs
Publication statusPublished - 2019

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Caregivers
Neoplasms
Patient Participation
Focus Groups
Interviews
Delivery of Health Care

Keywords

  • ADOLESCENTS
  • Advanced cancer
  • BREAST-CANCER
  • BURDEN
  • EXPERIENCES
  • FAMILY CAREGIVERS
  • Focus groups
  • HEALTH
  • IMPACT
  • Informal caregivers
  • OF-LIFE
  • Palliative oncology
  • SUPPORT
  • Social consequences
  • Social well-being
  • YOUNG-ADULTS

Cite this

van Roij, J. ; Brom, L. ; Youssef-El Soud, M. ; van der Poll-Franse, L.V. ; Raijmakers, N.J.H. / Social consequences of advanced cancer in patients and their informal caregivers : A qualitative study. In: Supportive Care in Cancer. 2019 ; Vol. 27, No. 4. pp. 1187-1195.
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abstract = "PurposeCancer 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.MethodsSeven 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.ResultsSocial 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.ConclusionSocial 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.",
keywords = "ADOLESCENTS, Advanced cancer, BREAST-CANCER, BURDEN, EXPERIENCES, FAMILY CAREGIVERS, Focus groups, HEALTH, IMPACT, Informal caregivers, OF-LIFE, Palliative oncology, SUPPORT, Social consequences, Social well-being, YOUNG-ADULTS",
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year = "2019",
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pages = "1187--1195",
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Social consequences of advanced cancer in patients and their informal caregivers : A qualitative study. / van Roij, J.; Brom, L.; Youssef-El Soud, M.; van der Poll-Franse, L.V.; Raijmakers, N.J.H.

In: Supportive Care in Cancer, Vol. 27, No. 4, 2019, p. 1187-1195.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Social consequences of advanced cancer in patients and their informal caregivers

T2 - A qualitative study

AU - van Roij, J.

AU - Brom, L.

AU - Youssef-El Soud, M.

AU - van der Poll-Franse, L.V.

AU - Raijmakers, N.J.H.

PY - 2019

Y1 - 2019

N2 - PurposeCancer 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.MethodsSeven 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.ResultsSocial 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.ConclusionSocial 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.

AB - PurposeCancer 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.MethodsSeven 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.ResultsSocial 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.ConclusionSocial 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.

KW - ADOLESCENTS

KW - Advanced cancer

KW - BREAST-CANCER

KW - BURDEN

KW - EXPERIENCES

KW - FAMILY CAREGIVERS

KW - Focus groups

KW - HEALTH

KW - IMPACT

KW - Informal caregivers

KW - OF-LIFE

KW - Palliative oncology

KW - SUPPORT

KW - Social consequences

KW - Social well-being

KW - YOUNG-ADULTS

U2 - 10.1007/s00520-018-4437-1

DO - 10.1007/s00520-018-4437-1

M3 - Article

VL - 27

SP - 1187

EP - 1195

JO - Supportive Care in Cancer

JF - Supportive Care in Cancer

SN - 0941-4355

IS - 4

ER -