Supporting Family Caregivers of Advanced Cancer Patients: A Focus Group Study
| Author | Camilla Zimmermann,Beth Edwards,Amy Deckert,Gary Rodin,Sarah Hales,Rinat Nissim |
| DOI | http://doi.org/10.1111/fare.12291 |
| Published date | 01 December 2017 |
| Date | 01 December 2017 |
R N, S H, C Z University of Toronto and University
Health Network
A D B E University Health Network
G R University of Toronto and University Health Network
Supporting Family Caregivers of Advanced Cancer
Patients: A Focus Group Study
Objective: As the rst stage in developing an
intervention for family caregivers of individuals
with advanced cancer, we conducted a focus
group study to understand their needs.
Background: Family caregivers play an impor-
tant role in the careof advanced cancer patients.
Despite substantial burden and distress experi-
enced by family caregivers of individuals with
advanced cancer, their needs are not addressed
systematically.
Method: The study took place at a large urban
cancer center in Canada. We conducted 2 focus
groups: one with 7 currentfamily caregivers, the
other with 7 bereaved caregivers. Participants
were asked about their support needs while pro-
viding care, how and when they preferred to
receive support, and the perceived barriers and
facilitators to addressing their support needs.
Responses were analyzed using the conventional
content analysis method.
Results: Family caregivers wished for support
in relation to 3 domains: decision-making in the
face of uncertainty, information about death and
dying, and current and anticipated emotional
distress. They identied 3 barriers to receiving
Princess Margaret Cancer Centre, University Health Net-
work, 610 University Ave,Toronto, ON, Canada M5G 2C4
(rinat.nissim@uhn.ca).
Key Words: Caregiving, chronic illness and families, quali-
tative research methods.
support: the organization of cancer care around
the patient, rather than the family; the timing of
information provision; and caregivers’ tendency
to dismiss their own needs. Caregiversexpressed
a strong need for caregiver-specic support.
Conclusion: This study allowed us to identify
caregiver-perceivedintervention needs, barriers
to access and continuity of intervention, and
suggestions for intervention design.
Implications: This information is of value to
inform the design of interventions for this pop-
ulation.
Informal caregivers make important contri-
butions to the overall care of cancer patients.
Health care system navigation, information
access, liaison with medical personnel, trans-
portation, economic aid, and physical and
emotional support for cancer patients are all
typically provided by family caregivers, and the
organization of formal health care systems is
most often based on the assumption that such
care is available (Gladjchen, 2004).
In advanced-stage cancer, the living–dying
interval, dened as occurring between the cri-
sis of knowledge of death at diagnosis and the
point of death (Pattison, 1977), has been pro-
longed substantially due to emerging medical
treatments (Lage & Crombet, 2011). Therefore,
although advanced cancer cannot be cured, its
prognosis can nowadays often be measured in
Family Relations 66 (December 2017): 867–879 867
DOI:10.1111/fare.12291
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