Paying attention to relatives of cancer patients

What can we learn from their online writings?

M.C. van Eenbergen, H. van Engelen, N.P.M. Ezendam, Lonneke van de Poll, K. Tates, E.J. Krahmer

Research output: Contribution to journalArticleScientificpeer-review

Abstract

Objective
Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online.

Methods
We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives.

Results
Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45% of the posts and group posters 64%). Blog posters found the disease-related topics more important than the group posters (45% and 29%).

Conclusions
This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics.

Practice implications
It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden
Original languageEnglish
Pages (from-to)404-410
Number of pages12
JournalPatient Education and Counseling
Volume102
Issue number3
DOIs
Publication statusPublished - 2019

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Posters
Neoplasms
Blogging
Caregivers

Keywords

  • ANXIETY
  • CARE
  • CAREGIVERS
  • Cancer patients
  • Content analysis
  • DEPRESSION
  • EXPERIENCES
  • IMPACT
  • INFORMATION
  • INTERVENTIONS
  • NEEDS
  • Relatives
  • User-generated content

Cite this

@article{66596931a2894c4f94bd318e0ff45d02,
title = "Paying attention to relatives of cancer patients: What can we learn from their online writings?",
abstract = "Objective Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online.Methods We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives.Results Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45{\%} of the posts and group posters 64{\%}). Blog posters found the disease-related topics more important than the group posters (45{\%} and 29{\%}).Conclusions This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics.Practice implications It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden",
keywords = "ANXIETY, CARE, CAREGIVERS, Cancer patients, Content analysis, DEPRESSION, EXPERIENCES, IMPACT, INFORMATION, INTERVENTIONS, NEEDS, Relatives, User-generated content",
author = "{van Eenbergen}, M.C. and {van Engelen}, H. and N.P.M. Ezendam and {van de Poll}, Lonneke and K. Tates and E.J. Krahmer",
year = "2019",
doi = "10.1016/j.pec.2018.11.004",
language = "English",
volume = "102",
pages = "404--410",
journal = "Patient Education and Counseling",
issn = "0738-3991",
publisher = "Elsevier Ireland Ltd",
number = "3",

}

Paying attention to relatives of cancer patients : What can we learn from their online writings? / van Eenbergen, M.C.; van Engelen, H.; Ezendam, N.P.M.; van de Poll, Lonneke; Tates, K.; Krahmer, E.J.

In: Patient Education and Counseling, Vol. 102, No. 3, 2019, p. 404-410.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Paying attention to relatives of cancer patients

T2 - What can we learn from their online writings?

AU - van Eenbergen, M.C.

AU - van Engelen, H.

AU - Ezendam, N.P.M.

AU - van de Poll, Lonneke

AU - Tates, K.

AU - Krahmer, E.J.

PY - 2019

Y1 - 2019

N2 - Objective Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online.Methods We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives.Results Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45% of the posts and group posters 64%). Blog posters found the disease-related topics more important than the group posters (45% and 29%).Conclusions This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics.Practice implications It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden

AB - Objective Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online.Methods We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives.Results Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45% of the posts and group posters 64%). Blog posters found the disease-related topics more important than the group posters (45% and 29%).Conclusions This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics.Practice implications It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden

KW - ANXIETY

KW - CARE

KW - CAREGIVERS

KW - Cancer patients

KW - Content analysis

KW - DEPRESSION

KW - EXPERIENCES

KW - IMPACT

KW - INFORMATION

KW - INTERVENTIONS

KW - NEEDS

KW - Relatives

KW - User-generated content

U2 - 10.1016/j.pec.2018.11.004

DO - 10.1016/j.pec.2018.11.004

M3 - Article

VL - 102

SP - 404

EP - 410

JO - Patient Education and Counseling

JF - Patient Education and Counseling

SN - 0738-3991

IS - 3

ER -