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Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey

BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the...

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Autores principales: Lund, Line, Ross, Lone, Petersen, Morten Aagaard, Groenvold, Mogens
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4122762/
https://www.ncbi.nlm.nih.gov/pubmed/25069703
http://dx.doi.org/10.1186/1471-2407-14-541
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author Lund, Line
Ross, Lone
Petersen, Morten Aagaard
Groenvold, Mogens
author_facet Lund, Line
Ross, Lone
Petersen, Morten Aagaard
Groenvold, Mogens
author_sort Lund, Line
collection PubMed
description BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers. RESULTS: A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found. CONCLUSIONS: Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users.
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spelling pubmed-41227622014-08-07 Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey Lund, Line Ross, Lone Petersen, Morten Aagaard Groenvold, Mogens BMC Cancer Research Article BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers. RESULTS: A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found. CONCLUSIONS: Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users. BioMed Central 2014-07-28 /pmc/articles/PMC4122762/ /pubmed/25069703 http://dx.doi.org/10.1186/1471-2407-14-541 Text en © Lund et al.; licensee BioMed Central Ltd. 2014 This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Lund, Line
Ross, Lone
Petersen, Morten Aagaard
Groenvold, Mogens
Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
title Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
title_full Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
title_fullStr Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
title_full_unstemmed Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
title_short Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
title_sort cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4122762/
https://www.ncbi.nlm.nih.gov/pubmed/25069703
http://dx.doi.org/10.1186/1471-2407-14-541
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