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The impact of caring on caregivers of patients with life-threatening organ failure

Published online by Cambridge University Press:  27 April 2023

Geana Paula Kurita Open the ORCID record for Geana Paula Kurita [Opens in a new window] ,
Inge Eidemak ,
Sille Larsen ,
Palle Bekker Jeppesen ,
Louise Bangsgaard Antonsen ,
Stig Molsted ,
Ylian Serina Liem ,
Tania Pressler  and
Per Sjøgren
Geana Paula Kurita*
Affiliation:
Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark Palliative Research Group, Department of Oncology, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark Multidisciplinary Pain Centre, Department of Anaesthesia, Pain and Respiratory Support, Neuroscience Centre, Rigshospitalet, Copenhagen, Denmark
Inge Eidemak
Affiliation:
Section of Palliative Medicine, Department of Oncology, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark
Sille Larsen
Affiliation:
Section of Palliative Medicine, Department of Oncology, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark
Palle Bekker Jeppesen
Affiliation:
Department of Intestinal Failure and Liver Diseases, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark
Louise Bangsgaard Antonsen
Affiliation:
Department of Intestinal Failure and Liver Diseases, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark
Stig Molsted
Affiliation:
Department of Clinical Research, Nordsjællands Hospital, Hillerød, Denmark
Ylian Serina Liem
Affiliation:
Department of Nephrology, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark
Tania Pressler
Affiliation:
Cystic Fibrosis Centre, Juliane Marie Centre, Rigshospitalet, Copenhagen, Denmark
Per Sjøgren
Affiliation:
Palliative Research Group, Department of Oncology, Centre for Cancer and Organ Diseases, Rigshospitalet, Copenhagen, Denmark
*
Corresponding author: Geana P. Kurita; Email: geana.kurita@regionh.dk
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Abstract

Objectives

This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping.

Methods

Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019–2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping.

Results

The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001).

Significance of results

Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver’s health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.

Keywords

CaregiverCaregiver burdenPalliative careQuality of lifeCoping behaviour
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 2 , April 2024 , pp. 331 - 337
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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