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International Journal of Nursing Studies
journal homepage: www.elsevier.com/locate/ijns
How family caregivers of cancer patients manage symptoms at home: A
systematic review
Helena Ullgren
a,b
, Theologia Tsitsi
c
, Evridiki Papastavrou
c
, Andreas Charalambous
c,d,
⁎
a
Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden
b
Karolinska University Hospital, Department of Oncology, Stockholm, Sweden
c
Cyprus University of Technology, Limassol, Cyprus
d
University of Turku, Department of Nursing Science, 20014, Turku, Finland
ARTICLE INFO
Keywords:
Family caregivers
Cancer
Symptom management
Systematic review
ABSTRACT
Introduction: Cancer affects not only the patient, but also the whole family, especially when a member of the
family assumes the role of the family caregiver. This puts an additional emotional, social and financial strain on
the family caregivers. Family caregivers of cancer patients are actively involved in the care provided at the home
setting through various ways including practical tasks, symptom management and care coordination. The focus
of preceding studies on family caregivers and symptom management was either on pain or the patients’ and
family caregivers’ experience of symptom management and coping.
The aim of this review was to provide evidence on how family caregivers manage symptoms and side effects
at home, in adult cancer patients throughout the disease trajectory.
Methods: A systematic literature review was performed in PubMed, CINAHL, Web of Science and the Cochrane
Central Register of Controlled Trials with a combination of keywords and MeSH terms for family caregivers,
cancer, symptoms, side effects and management. Based on predetermined inclusion and exclusion criteria, a total
of 1270 articles were screened and 20 studies were included in the analysis. A descriptive analysis was per-
formed due to the heterogeneity of the findings.
Results: The results showed that only a limited number of studies (3/20) explored how and what family care-
givers do in symptom management as a primary outcome. Family caregivers provided psychosocial support, such
as supporting and motivating the patient and maintaining social engagement. Caregivers provided physical
support such as with the administration of medicine and tube feeding. As an integral part of managing the
symptoms, family caregivers actively monitored and assessed symptoms to timely recognize any treatment re-
lated side effects, assess the response to therapeutic interventions and recognize possible deterioration in phy-
sical status. Furthermore, family caregivers were often the decision maker – being alert, watching and waiting
and decided when to act and when not to act.
Conclusions: Family caregivers are doing work similar to healthcare professionals, when managing symptoms
and side effects at home in patients with cancer. Advanced tasks such as assessing, monitoring and deciding
when and how to act are included in the daily routine of family caregivers.
What is already known about the topic?
•
Researchers on how family caregivers of patients with cancer
manage symptoms at home, have focused mainly on their experi-
ence and coping, not how or what they do.
•
Family caregivers manage complex symptoms and coordinate care
at home.
What this paper adds
•
A significant part of family caregivers’ symptom management work
involves “psychosocial support”– including emotional and psycho-
logical support, providing hope, managing anxiety and sustaining
social engagement.
•
Family caregivers monitor and assess symptoms and side effects, as
well as administer medication and make various decisions on
medication administration.
https://doi.org/10.1016/j.ijnurstu.2018.05.004
Received 18 December 2017; Received in revised form 5 May 2018; Accepted 8 May 2018
⁎
Corresponding author at: Cyprus University of University, 15th Vragadinou Street, 3041, Limassol, Cyprus.
E-mail addresses: helena.ullgren@sll.se, helitropen (H. Ullgren), theologia.tsitsi@cut.ac.cy (T. Tsitsi), e.papastavrou@cut.ac.cy (E. Papastavrou),
andreas.charalambous@cut.ac.cy, AndreasC466 (A. Charalambous).
International Journal of Nursing Studies 85 (2018) 68–79
0020-7489/ © 2018 Elsevier Ltd. All rights reserved.
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