Pre-loss grief experiences of adults when someone important to them is at end-of-life: A qualitative systematic review

Abstract

Pre-loss grief can be experienced by relatives before impending death; however, limited understanding exists about the impact of pre-loss grief on bereavement. This systematic review aimed to synthesize qualitative research evidence reporting adults’ experiences of pre-loss grief within cancer care. Thirteen studies were selected, and three key themes identified. Findings indicate that relatives transitioned through lived experiences during end-stage cancer, and that meanings attached to these experiences influenced how they experienced pre-loss grief. Limited formal support was identified to navigate these experiences; however, context was seen as important, and skilled healthcare practitioners and physical environment were key to facilitating preparedness

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Death Studies
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Pre-loss grief experiences of adults when someone
important to them is at end-of-life: A qualitative
systematic review
Anne Fee, Jeff Hanna & Felicity Hasson
To cite this article: Anne Fee, Jeff Hanna & Felicity Hasson (2021): Pre-loss grief experiences
of adults when someone important to them is at end-of-life: A qualitative systematic review, Death
Studies, DOI: 10.1080/07481187.2021.1998935
To link to this article: https://doi.org/10.1080/07481187.2021.1998935
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Pre-loss grief experiences of adults when someone important to them is at
end-of-life: A qualitative systematic review
Anne Fee
a
, Jeff Hanna
b
, and Felicity Hasson
a
a
Institute of Nursing and Health Research, Ulster University, Northern Ireland, UK;
b
School of Nursing and Midwifery, Queen’s
University Belfast, Northern Ireland, UK
ABSTRACT
Pre-loss grief can be experienced by relatives before impending death; however, limited
understanding exists about the impact of pre-loss grief on bereavement. This systematic
review aimed to synthesize qualitative research evidence reporting adults’experiences of
pre-loss grief within cancer care. Thirteen studies were selected, and three key themes
identified. Findings indicate that relatives transitioned through lived experiences during
end-stage cancer, and that meanings attached to these experiences influenced how they
experienced pre-loss grief. Limited formal support was identified to navigate these experien-
ces; however, context was seen as important, and skilled healthcare practitioners and phys-
ical environment were key to facilitating preparedness.
Introduction
Cancer is an ongoing public health issue that resulted
in approximately ten million deaths worldwide during
2020 (World Health Organization, 2021). With early
detection and treatment, many cancers are curable
(WHO, 2021). Other cancers are often non-curative
and end-of-life care may be offered. Advances in diag-
nostic and therapeutic capabilities mean that the
period between poor prognosis and death can be long
(Lage & Crombet, 2011).
Although the terms anticipatory, pre-loss, and pre-
death grief have been used interchangeably to describe
grief symptoms in relatives or caregivers during the
end-of-life phase (Lindauer & Harvath, 2014), there is
also debate about how these concepts may differ.
Lindauer and Harvath (2014) suggested that anticipa-
tory grief can occur between 6 and 18 months before
death, whereas in pre-death/pre-loss grief the time
span is more likely to be over the entire course of the
terminal illness. By contrast, Nielsen et al. (2016)
speculated that the term pre-loss grief simply indicates
the presence of grief symptoms, whereas anticipatory
grief might involve anticipation of bereavement out-
comes. More recently, Nielsen et al. (2017) defined
pre-loss grief as “grief reaction due to multiple losses
during end-of-life caregiving”(Nielsen et al., 2017,
p. 2048). Such grief can be experienced by patients
and others including family members, close friends or
family carers, and has been associated with negative
psychological outcomes, and complicated grief (Holm
et al., 2019; Nielsen et al., 2017). Responses to
impending loss can result in grief, depression, guilt,
and functional impairment in daily life (Nielsen
et al., 2017).
There is a requirement for healthcare practitioners
to be attentive to pre-loss grief reactions in family
carers (Moon, 2016), and for tailored interventions to
support pre-loss grief (Nielsen et al., 2017). Yet most
research exploring the concept of pre-loss grief has
centered on its measurement (Holm et al., 2019), the
identification of risk factors (Burke et al., 2015), or on
specific diagnoses such as dementia (Cheung et al.,
2018). Although vast differences have been identified
in disease trajectories between non-curative illnesses
including cancer and dementia (Krikorian et al.,
2020), there is still limited research focusing on the
experience of pre-loss grief for cancer patients
(Hottensen, 2010) and their family carers (Coelho &
Barbosa, 2017). Furthermore, a scarcity of quality
research in this area has been highlighted (Patinadan
et al., 2020). This is an important gap to address,
given reports indicating that pre-loss grief among rela-
tives of someone with a terminal illness have been
CONTACT Anne Fee a.fee@ulster.ac.uk Institute of Nursing and Health Research, Ulster University, Shore Road Newtownabbey, BT37 0QB,
Northern Ireland, UK.
Supplemental data for this article can be accessed on the publisher’s website.
ß2021 Taylor & Francis Group, LLC
DEATH STUDIES
https://doi.org/10.1080/07481187.2021.1998935

identified as an area of concern (Åberg et al., 2004),
and also that when pre-loss grief needs are met, indi-
viduals are less likely to experience negative bereave-
ment outcomes (Vergo et al., 2017).
Given the suggestion that the experience of pre-loss
grief is multi-dimensional (Nielsen et al., 2017), a sys-
tematic review of qualitative studies may provide
insight into the reality and meanings attributed to
pre-loss grief by those who are experiencing it. This is
important to increase awareness amongst clinicians
and to inform current and future support services
within cancer care. Consequently, our review aims to
identify, appraise, and synthesize available qualitative
evidence on adults who are experiencing pre-loss grief
when someone important to them has a non-curative
cancer prognosis. The research question is: “What do
we currently know about the pre-loss grief experien-
ces, coping strategies, and holistic support needs of
adults when someone important to them is at end
of life?”
The focus of this review is on adults when someone
important to them is at end of life. Throughout, the
terms carer/caregiver or relative will be used inter-
changeably when referring to adults, as these terms
are often used to describe close relatives or friends
who provide practical or emotional support for some-
one who is unable to do this themselves due to illness,
frailty, or disability (NHS England, 2018). The term
patient is used to describe someone important
to them.
Materials and methods
Design
A systematic review of qualitative evidence was under-
taken in accordance with Joanna Briggs Institute (JBI)
methodology (Lockwood et al., 2015). Reporting of
the review findings were guided by The Enhancing
Transparency in Reporting the Synthesis of
Qualitative Research (ENTREQ) framework (Tong
et al., 2012; see Supplementary File 1).
Search strategy
Electronic searches were undertaken in Ovid
MEDLINE, PsycINFO, CINAHL and EMBASE, on 17
October 2020. The search was limited to English lan-
guage, and a timeframe of the year 2000–2020 was
applied. MeSH terms and key words were used with
Boolean logic and operators. Supplementary File 2
provides the complete search strategy for one data-
base. Google Scholar and reference lists of relevant
studies were searched to identify research not indexed
in the electronic databases. Screening was undertaken
by two reviewers (AF, FH) and moderated by a third
reviewer (JRH).
Inclusion and exclusion criteria
Studies were eligible for inclusion if they met eligibil-
ity criteria (Table 1). Studies using a mixed-methods
design that collected, analyzed, and reported qualita-
tive data were also included. Unpublished studies and
other texts such as reports, expert opinion papers, and
clinical guidelines were excluded from the review.
Data extraction and quality assessment
Data on the characteristics of included studies were
extracted using a form developed in line with review
aims (Lockwood et al., 2015). This included the name
of the first author, year of publication, geographical
location, study population, sample size, study design,
and the findings of interest relevant to the review
questions (Table 2). Data extraction was undertaken
independently by two authors (AF, FH). Any
Table 1. Eligibility criteria.
Inclusion Exclusion
Phenomena of Interest:
Adults’experiences of anticipatory or pre-loss grief, coping mechanisms
and support needs, when an adult who is important to them is at end-
of-life from advanced/terminal cancer.
Conditions other than cancer, such as dementia, HIV/AIDS.
Types of participants:
Adults from any sociodemographic background and ethnicity, who are
important to someone at end-of-life from cancer.
Individuals <18 years old.
Type of setting:
Studies conducted in any country were eligible but need to be in English.
Studies not published in the English language.
Timeframe:
Studies published between 1 January 2000 and 31 October 2020.
Studies published prior to 2000.
Types of outcome measures:
The phenomena of interest are the experiences and perspectives
of relatives.
Studies that adopted quantitative research designs.
2 A. FEE ET AL.

Table 2. Characteristics of included studies.
Author/publication year/location Study aim Study design/method Study population/ sample size Quality appraisal score
Findings relevant to the
research question
Anngela-Cole and Busch (2011)
USA
Investigation into stress, anticipatory
mourning, and cultural practices
among family carers from
independent and inter-dependent
cultural groups.
Qualitative, phenomenological
approach focus group interviews
(N¼8).
Thematic analysis was adopted.
Convenience sample of family carers
from peer-led carer support
groups (N¼56).
Female (n¼51), male (n¼5).
Mean age 57.9
6/10 Experience: Culturally based
differences existed in how carers
experienced and coped with
anticipatory mourning.
Coping: All experienced similar
stressors, yet variations existed in
how they perceived stress, and
how they coped with anticipatory
mourning.
Support needs: Carers from all
ethnic groups had strong feelings
about their experiences of
caregiving and anticipatory grief,
yet the perceptions and
attributions of their feelings
varied. The provision of culturally
sensitive support was suggested
as beneficial.
Bouchal et al. (2015)
Canada
To explore the retrospective
experiences of anticipatory grief
of families who have lost a loved
one from cancer.
Qualitative, hermeneutic
phenomenological approach, in-
depth interviews with individuals
representing the family.
Purposeful sample.
Families who lost a loved one to
cancer.
Spouses (N¼8).
Female (n¼2); male (n¼6).
Age range 55–81
9/10 Experience: Family members
experienced a complex process of
holding on and letting go which
was central to the anticipatory
grief experience.
Coping: Carer preparedness involved
cognitive, emotional, and
social processes.
Breen et al. (2018)
Australia
To explore family carers’preparation
for death
Semi-structured interviews using
grounded theory analysis.
Informed by social constructionism.
Purposeful sample.
Family carers in receipt of palliative
care (N¼16).
Spouses (n¼10), adult child (n¼5),
friend (n¼1).
Female (n¼12), male (n¼4)
Age range: 45–77 (mean age 64.4)
9/10 Experience: Themes: “Here and
Now,”and “Negotiating the Here/
After.”The unpredictable
trajectory of the illness and
feeling consumed by the care
complicated preparations for the
death.
Coping: Carers were cognitively
prepared, some were behaviorally
prepared, but emotional
preparedness was challenging.
Support: Services should not assume
that all family carers are well-
prepared for the death. Carers
would likely benefit from the
assessment and promotion of
their death preparedness.
Cagle and Kovacs (2011)
USA
To examine perceptions of
preparedness and support of
informal carers of hospice
oncology patients.
Narrative response to pre-death and
post-death questionnaires.
Thematic content analysis using the
constant-comparison method.
Purposeful sample.
Informal carers of hospice oncology
patients (n¼69).
Spouse (n¼22); parent (n¼22),
sibling (n¼10), other (n¼14),
missing (n¼1)
4/10 Support: Sources of support for pre-
death preparedness were
identified as: (a) informational
(communication, information, and
education); (b) hospice staff and
volunteers; (c) family, friends, and
(Continued)
DEATH STUDIES 3

Table 2. Continued.
Author/publication year/location Study aim Study design/method Study population/ sample size Quality appraisal score
Findings relevant to the
research question
Female (n¼50), male (n¼18),
missing (n¼1).
neighbors; (d) resources-specific
services and equipment; and (e)
faith and spirituality.
Clukey, (2007)
USA
To explore the anticipatory
grief experience.
Phenomenological approach using
semi-structured interviews.
Purposeful sample.
Recently bereaved who had received
the services of a home care
hospice (N¼22).
Spouses (n¼9), uncle (n¼1),
parents (n¼11), grandparent
(n¼1).
Female (n¼18), male (n¼4).
Age range: 22-79 (mean age 53).
6/10 Experience: Being in a state of
anticipatory grief was defined as:
a state of transition usually
initiated by either the diagnosis of
a terminal illness or the prognosis
from a physician that no further
medical intervention will cure the
dying person.
Coping: Components of coping
included: finalizing of the
connection with the loved one
through touch, saying goodbye,
resolving issues, or sharing
experiences. Other elements were
preparing (for example funeral
arrangements) and maintaining
hope.
Support: Hospice services were
essential. Delivery of medical
equipment and medications eased
the burden of the carers, or
financial relief provided by
hospice supplying medications
was appreciated. Other ways of
being supportive included being
available 24h a day by phone.
Coelho et al. (2020)
Portugal
To explore the experience of family
carers of patients with terminal
cancer to identify the core
characteristics and the specific
adaptive challenges related to AG
in the context of end-of-
life caregiving.
Qualitative design utilizing in-semi-
structured interviews.
Analyzed using thematic analysis.
Purposeful sample.
Family carers of adult cancer patients
(N¼26). Adult children (n¼14),
spouses (n¼10), parent (n ¼1),
aunt (n¼1).
Female (n¼23), male (n¼3).
Age range: 27-78 (mean age 55.5).
7/10 Experience: Themes: (1) Traumatic
distress; uncertainty of illness;
image of degradation; carer
impotence; life disruption. (2)
Separation distress: anticipation of
death; relational losses; separation
anxiety; sense of protection; and
affective deprivation.
Coping: Emotional regulation and
dysregulation (self-regulation
efforts; symptoms of
disorganization).
Dumont et al. (2008)
Canada
To identify the main elements
constitutive of the experience of
providing care and assistance to a
patient with terminal cancer that
influence the grieving process.
Semi-structured interviews.
Qualitative design guided by
three conceptual frameworks.
Purposeful sample.
Family carers of adults with cancer
(N¼18).
Spouses (n¼12), parent or friend
(n¼6).
Age range: 33-75.
7/10 Experience: Six principal dimensions
were reported:
a. Characteristics of the
family carer
b. Patient characteristics
c. Symptoms of the illness
d. The relational context
e. Social and professional support
4 A. FEE ET AL.

f. Circumstances surrounding the
death, this relates to the
moment of death and the level
of preparedness for death.
Hebert et al. (2009)
USA
To determine the factors that family
carers believe are important to
preparing for death and
bereavement, determine the
relationship between them, and
develop a conceptual model of
preparedness that can help guide
clinical practice and
future research.
Qualitative design employing focus
groups (n¼2), and ethnographic
interviews (N¼33).
Purposeful sample.
Family carers of adults (N¼33).
Active carers (n¼27), bereaved
carers (n¼6).
Spouse (n¼7), child (n¼12) and
other (n¼14).
Female (n¼27), male (n¼6).
Age range 50–59.
7/10 Experience: (1) Life experiences: The
duration of the caregiving
experience influenced the level of
preparedness of the participants
and opportunity to talk about
advanced care plans.
(2) Uncertainty—concurrent theme in
relation to:
(a) medical—reflected in the need
for information from healthcare
practitioners relating to diagnosis,
prognosis, and clinical course.
(b) practical uncertainty—related to
a range of tasks such as
completing will, managing patient
finances and estate planning.
(c) psychosocial—reflected concerns
about altered family dynamics and
relationships as a consequence of
the illness and death.
(d) religious/ spiritual referred to
existential concerns and issues of
meaning.
Support: Communication: A key to
prepare carers was the need for
clear, consistent, and reliable
information between all parties
(healthcare practitioner, patient,
and carer).
Preparedness: The degree to which a
carer is ready for death, has
cognitive, affective, and
behavioral dimensions.
Pusa et al. (2012)
Sweden
To illuminate the meanings of
significant other’s lived
experiences of their situation from
diagnosis through and after the
death of a family member as a
consequence of inoperable
lung cancer.
Qualitative design using an
interpreted phenomenological
hermeneutic approach
using interviews.
Significant others (N¼11)
Partner (n¼7); child (n¼3): other
(n¼1).
Female (n¼9), male (n¼2).
Age range 35-79 (mean age 57.9).
8/10 Experience: Themes:(1) Being
unbalanced—this is further
divided into feeling distressed and
experiencing ambivalence. (2)
Being transitional—this is further
divided into being responsible,
feeling secluded and struggling
for good care. (3) Being cared
for—this is further divided into
feeling safe and being pleased
with patient care, related to
feelings of satisfaction concerning
healthcare and medical service. (4)
Moving forward—this is further
divided into adjusting in everyday
(Continued)
DEATH STUDIES 5

Table 2. Continued.
Author/publication year/location Study aim Study design/method Study population/ sample size Quality appraisal score
Findings relevant to the
research question
life, gaining strength, and
changing perspective.
Sand and Strang (2006)
Sweden
To explore the experience of
existential isolation experienced
in association with an incurable
disease, the origins of these
feelings and their interaction.
Qualitative design using semi-
structured interviews with open
ended questions.
Purposeful sample.
Next-of-kin (N¼20). Spouses
(n¼12), children/parents/siblings
(n¼8)
Female (n¼12), male (n¼8)
Age range: 21–92 (mean age 63).
9/10 Experience: Themes: (1) Changes:
reduced protection; changed life
conditions; altered everyday
circumstances; emotional changes
and pathological changes of the
patient’s body.
(2) Circumstances—not enough
time; ignored; inability to
communicate; without
information; suffering; separate
ways; and the next of kin’s
experiences of responsibility. (3)
Separate ways—as the disease
progressed and hope for long
survival lessened there was a
realization that the patient and
the carer went their
separate ways.
Toyama and Honda (2016)
Japan
To explore and clarify how talking
to family carers of patients with
end-of-life illness using the
narrative approach influences the
process of anticipatory grief.
Qualitative design using an
intervention study targeting
family carers.
Two family carers, Case A: the
patient’s daughter, aged in her
20 s who was a nurse.
Case B: the carer was the patient’s
wife, in her 50 s and a
cancer survivor.
8/10 Experience: Themes: (1) Talking
about their expected role in the
family. An expectation for the
daughter (as a nurse) to adopt
the carer role.
(2) Responding to expectations
within the family in a way that
does not fit with the present self.
The daughter was conflicted
about providing care and also
encouraged her father’s
anticipatory grief. The patient’s
wife recognized that she had to
force herself to fulfill the carer’s
role and recognized problems
acting as her husband’s substitute.
This led her to feel she was not
sufficiently fulfilling either role.
(3) Facing the patient departing for
death as a family member. Both
recognized that the roles expected
of them were not their true roles
and began to prepare for the
coming less and end-of-life care
while feeling conflicted over this
realization.
(4) Grieving in anticipation of less
from the viewpoint of a family
member. Over time they did not
6 A. FEE ET AL.

feel trapped but anticipated and
grieved for the loss.
Waldrop (2007)
USA
The study aim was to answer two
questions: (1) What is the nature
of caregiver grief in terminal
illness. (2) How do the features of
caregiver grief change
after death?
Exploratory descriptive
phenomenological study.
Qualitative (interviews) and
quantitative methods used.
Purposeful sample.
Family carers (n¼30) who were
caring for a relative or friend with
terminal illness.
Females (daughters, daughters-in-
law, wives, grand-daughter, and a
friend; n¼23); males (husbands
and sons; n¼7).
8/10 Experience: (1) Physical symptoms of
grief involved sleep disruption,
exacerbation of chronic problems
such as blood pressure or back
pain; physically burdensome tasks
such as housework.
(2) Psychological and emotional well-
being including sadness and tears;
anger (at providers and family)
and attempts to gain control over
grief.
(3) Social functioning: increased or
decreased family cohesion;
increased or decreased
social support.
Werner-Lin et al. (2020)
USA
To evaluate the psychological,
social, and behavioral impact of
Li-Fraumeni Syndrome (LFS), and
to refine evidence-based
counseling strategies.
Semi-structured interviews (n¼66),
using modified grounded theory
and interpretive description.
Purposeful sample.
Families (n¼45) completed 66
interviews.
Family members (n¼117) were aged
13-81 years.
Parent-child groups (n¼19), partner
dyads (n¼26), sibling groups
(n¼11), mixed groups (n¼10).
8/10 Experience: Families reported high
burden on roles and resources
and limited guidance to prepare
for or achieve resolution with
grief. Anticipatory loss, the
experience of bereavement prior
to an expected change,
distinguishes hereditary cancer risk
from a sporadic diagnosis. Such
grief is often incomplete in impact
or meaning, subjected to rapid or
profound change as conditions
worsen, and poorly understood. In
this study losses were
compounded by profound
uncertainty, a chronic feature of
Li-Fraumeni Syndrome which
compromised mourning.
DEATH STUDIES 7

disagreement was resolved by discussion and referral
to a third reviewer (JRH).
Studies were appraised for quality by two reviewers
(AF, FH) and guided by the JBI-QARI framework
(Lockwood et al., 2015). A review level narrative sum-
mary and table matrix displaying the risk of bias
based on an aggregate score for each study was devel-
oped. Studies received a quality banding as either
high, medium, or low; however, no studies were
excluded based solely on quality assessment. Quality
appraisal scores are shown in Table 2.
Data synthesis
A thematic synthesis was adopted (Thomas & Harden,
2008) as a suitable approach for synthesizing the find-
ings of multiple qualitative studies (Evans et al.,
2019). For data extraction, findings related to the
experience, coping and support were extracted from
selected articles. Only data and quotes from primary
studies were extracted and used to inform
the analysis.
Thematic synthesis involved the coding of text, the
development of descriptive themes, and the generation
of analytical themes. Following line by line coding,
authors (AF, FH) inductively coded data by identify-
ing categories and concepts based on the research
question, which resulted in descriptive themes. Next,
these themes were further defined and refined, and
clustered to generate analytical themes and sub
themes. Descriptive, analytical, and sub-themes were
discussed and checked for reliability through continu-
ous peer review within the research team [AF, JRH,
FH]. NVivo v.12 (NVivo, 2013) was used to man-
age data.
Results
A total of 914 articles were identified from the
searches and exported to RefWorks Reference
Management system, of which 299 were removed due
to duplication. The remaining 615 papers were
screened by title and abstract and 567 were excluded
as they did not meet the inclusion criteria (Figure 1).
Characteristics of the included studies
Six studies originated from the United States
(Anngela-Cole & Busch, 2011; Cagle & Kovacs, 2011;
Clukey, 2007; Hebert et al., 2009; Waldrop, 2007;
Werner-Lin et al., 2020), two from Canada (Bouchal
et al., 2015; Dumont et al., 2008), and two from
Sweden (Pusa et al., 2012; Sand & Strang, 2006).
There was one study each from Portugal (Coelho
et al., 2020), Australia (Breen et al., 2018) and Japan
(Toyama & Honda, 2016)
.
Study foci were spouses
(n¼167), adult children (n¼21), siblings (n¼22),
parents (n¼52), other/unspecified relationships
(n¼55). Of the 12 studies that reported gender, the
majority of the sample were female (Anngela-Cole &
Busch, 2011; Bouchal et al., 2015; Breen et al., 2018;
Cagle & Kovacs, 2011; Clukey, 2007; Coelho et al.,
2020; Dumont et al., 2008; Hebert et al., 2009; Pusa
et al., 2012; Sand & Strang, 2006; Toyama & Honda,
2016; Waldrop, 2007). Research approaches used were
phenomenology (Anngela-Cole & Busch, 2011;
Bouchal et al., 2015; Clukey, 2007; Pusa et al., 2012;
Sand & Strang, 2006; Waldrop, 2007), grounded the-
ory (Breen et al., 2018; Werner-Lin et al., 2020), nar-
rative (Cagle & Kovacs, 2011; Toyama & Honda,
2016), ethnography (Hebert et al., 2009), thematic
analysis (Coelho et al., 2020), and content analysis
(Dumont et al., 2008).
Synthesis
Thematic analysis of reported data resulted in 14
descriptive themes reflecting groupings of similarities
and differences in initial codes (Thomas & Harden,
2008), and aligned with the main tenants of the
research question. On further analysis, the descriptive
themes were collapsed into three overarching
themes—making sense of pre-loss grief, pre-loss grief
processes, and the impact of context on meaning and
process of pre-loss grief (Table 3).
Making sense of pre-loss grief
Making sense of pre-loss grief comprised four descrip-
tive themes: recognition of transition, planning for the
future, living in uncertainty, and multiple losses. The
theme describes how participants in the primary stud-
ies attempted to make sense of this complex and
uncertain period in their lives through recognizing
loss and transitions and making plans for their future.
Pusa et al. (2012) described the nature of lived
experiences of relatives of end-stage lung cancer
patients. Participants in this study described changes
that occurred in their lives in line with the illness tra-
jectory and often as a result of the patient’s increased
need for help. One such change was their transition
into the role of carer. Although this was viewed by
some as limiting their life, it was also important for
relatives to feel that they had done their very best for
their loved one: “It has been so important to me
8 A. FEE ET AL.

that.that I’ve done everything I could. I am not
ashamed, because I did what I could. And it has been
really important not having to proceed with a bad
conscience”(Pusa et al., 2012, p. 37).
Similarly, other studies reported that relatives
attempted to make sense of their experiences whilst in
the pre-loss phase (Bouchal et al., 2015; Clukey, 2007;
Toyama & Honda, 2016). A common perception from
relatives was that the period between receiving the
poor prognosis and the active dying phase offered a
time for planning for the future, such as managing
the patient’s financial matters, and a chance for them
(patients and relatives) to make the most of their
remaining time together (Bouchal et al., 2015; Clukey,
2007; Hebert et al., 2009; Toyama & Honda, 2016).
During the pre-loss phase relatives perceived the
patient as not the same person as before (Pusa et al.,
2012), and the patient’s loss of independence often
resulted in distress for relatives. For these relatives,
overwhelming feelings of loss of the patient as they
knew them, consumed their lives, and often defined
their pre-loss grief experience (Clukey, 2007; Pusa
et al., 2012; Werner-Lin et al., 2020). Such loss was
reported to be compounded by uncertainty (Werner-
Lin et al., 2020). However, other authors associated
uncertainty with distress (Coelho et al., 2020), or
altered family dynamics (Hebert et al., 2009).
Participants in one study described how uncertainty
allowed them to foster hope: “We do not know what
will happen next. He has always recovered after com-
ing to the hospital. I’m always holding on to this
hope”(Coelho et al., 2020, p. 695).
Pre-loss grief processes
The theme of pre-loss grief processes comprised eight
descriptive themes: a spectrum of intense emotions,
physical and cognitive strategies to alleviate stress,
faith-based strategies, managing unpredictability, hold-
ing on while letting go, dimensions of preparedness,
avoidance strategies, and altered family dynamics.
This theme encompasses psychological and physical
processes described by relatives during the pre-loss
phase and how they were experienced and managed.
Studies reported that in the pre-loss phase, relatives
experienced a range of emotions such as traumatic
distress (Coelho et al., 2020); stressful emotions (Pusa
Records excluded
(n = 567)
Records screened
(tle/abstract)
(n = 615)
Records aer duplicates removed
(n = 615)
Idenficaon
Eligibility
Included Screening
Addional records idenfied
through other sources
(n = 4)
Records idenfied through
database searching
(n = 910)
Full-text arcles
excluded, with reasons
(n = 35)
Quantave analysis: (n =
21)
Focus is other than grief: (n
=6)
Paent experience (n = 2)
Full text unavailable (n = 2)
Other reason: (n = 4)
Full-text arcles assessed
for eligibility
(n = 48)
Studies included in
qualitave synthesis
(n = 13)
Figure 1. PRISMA 2009 flow diagram.
DEATH STUDIES 9

et al., 2012), intense psychological and emotional
responses (Waldrop, 2007), mood instability, impa-
tience, and acute stress (Coelho et al., 2020). Often
such intense experiences impacted on family dynamics
or social functioning (Hebert et al., 2009; Sand &
Strang, 2006; Toyama & Honda, 2016; Waldrop,
2007). To manage emotional strain some study partic-
ipants adopted strategies such as avoiding conversa-
tions about the impending death as this was perceived
as too emotionally demanding (Coelho et al., 2020;
Pusa et al., 2012; Waldrop, 2007). Physical strategies
that were perceived to be important for relatives dur-
ing the end-of-life period included relaxation or exer-
cise such as getting out for a walk (Pusa et al., 2012)
and cognitive strategies included engagement in activ-
ities such as reading and journaling (Bouchal et al.,
2015). Six studies reported dependance on preexisting
religious and spiritual beliefs (Anngela-Cole & Busch,
2011; Breen et al., 2018; Cagle & Kovacs, 2011;
Coelho et al., 2020; Dumont et al., 2008; Hebert et al.,
2009). One study found that, although relatives
experienced traumatic distress and life disruption,
they oscillated between these feelings and a process of
emotional regulation whereby they inhibited intense
feelings to minimize emotional distress (Coelho
et al., 2020).
It was suggested that a sense of “holding on whilst
letting go”was central to the pre-loss grief experience
as it signified relatives’desire to hold on to the patient
whilst acknowledging that death was unavoidable.
This sense was heightened for relatives during times
of physical transition, such as leaving home for hos-
pice (Bouchal et al., 2015).
Seven studies referred to the concept of prepared-
ness for the impending death (Bouchal et al., 2015;
Breen et al., 2018; Cagle & Kovacs, 2011; Hebert
et al., 2009; Pusa et al., 2012; Sand & Strang, 2006;
Toyama & Honda, 2016). Preparedness was defined
by one author as “the degree to which a caregiver is
ready for the death”(Hebert et al., 2009, p. 8).
Components of preparedness before the death com-
prised informational (having clear information
Table 3. Overview of analytical and descriptive themes.
Analytical themes Descriptive themes Studies
Making sense of loss Living in uncertainty Hebert et al., 2009; Coelho et al., 2020; Werner-Lin et al.,
2020; Pusa et al., 2012; Sand & Strang, 2006.
Planning for the future Breen et al., 2018; Pusa et al., 2012; Werner-Lin et al., 2020;
Sand & Strang, 2006; Clukey, 2007; Bouchal et al., 2015;
Hebert et al., 2009; Toyama & Honda, 2016
Recognition of transitions Breen et al., 2018; Clukey, 2007; Bouchal et al., 2015; Pusa
et al., 2012; Toyama & Honda, 2016.
Multiple losses Clukey, 2007; Pusa et al., 2012; Werner-Lin et al., 2020; Coelho
et al., 2020; Toyama & Honda, 2016; Sand & Strang, 2006;
Hebert et al., 2009.
Pre-loss grief processes Faith based strategies Anngela-Cole & Busch, 2011; Breen et al., 2018; Cagle &
Kovacs, 2011; Coelho et al., 2020; Dumont et al., 2008;
Hebert et al., 2009.
Altered family dynamics Hebert et al., 2009; Toyama & Honda, 2016; Sand & Strang,
2006; Waldrop, 2007.
A spectrum of intense emotions Breen et al., 2018; Coelho et al., 2020; Pusa et al., 2012;
Waldrop, 2007; Toyama & Honda, 2016; Werner-Lin et al.,
2020; Anngela-Cole & Busch, 2011; Dumont et al., 2008.
Managing unpredictability Coelho et al., 2020; Breen et al., 2018; Clukey, 2007; Hebert
et al., 2009; Sand & Strang, 2006; Werner-Lin et al., 2020.
Dimensions of preparedness Bouchal et al., 2015; Breen et al., 2018; Dumont et al., 2008;
Hebert et al., 2009; Toyama & Honda, 2016; Sand & Strang,
2006; Cagle & Kovacs, 2011.
Holding on while letting go Bouchal et al., 2015; Breen et al., 2018; Clukey, 2007; Hebert
et al., 2009
Avoidance strategies Coelho et al., 2020; Pusa et al., 2012; Waldrop, 2007; Anngela-
Cole & Busch, 2011
Physical and cognitive strategies
to alleviate stress
Pusa et al., 2012; Bouchal et al., 2015; Clukey, 2007; Waldrop,
2007; Anngela-Cole & Busch, 2011.
Impact of context on meaning and
process of pre-loss grief
Emotional support as essential
for carer well-being
Breen et al., 2018; Cagle & Kovacs, 2011, Pusa et al., 2012;
Waldrop, 2007; Anngela-Cole & Busch, 2011; Dumont
et al., 2008
Influence of healthcare
practitioners on the
experience of pre-loss grief
Clukey, 2007, Pusa et al., 2012; Toyama & Honda, 2016;
Waldrop, 2007; Cagle & Kovacs, 2011; Hebert et al., 2009;
Sand & Strang, 2006; Werner-Lin et al., 2020; Dumont
et al., 2008
Effective communication Breen et al., 2018; Cagle & Kovacs, 2011; Hebert et al., 2009;
Pusa et al., 2012; Sand & Strang, 2006; Dumont et al., 2008
Contextual factors Cagle & Kovacs, 2011; Pusa et al., 2012; Dumont et al., 2008;
Bouchal et al., 2015; Clukey, 2007
10 A. FEE ET AL.

surrounding the patient’s poor prognosis and declin-
ing health); cognitive (an awareness that death was
the inevitable outcome); behavioral (understanding
their loved one’s funeral wishes or having their per-
sonal matters organized such as having a will); and
affective (spending quality time with their loved one
before the death; Hebert et al., 2009). It was suggested
that these four dimensions may have different relative
weights; that is, for some carers, information was pri-
marily needed; whereas for others, being comforted in
the immediate pre-loss period was key. Breen et al.
(2018) concurred with these assertions and added that
the “multidimensional nature of preparedness is over-
looked”(Breen et al., 2018, p. 1478) and further sug-
gested that some relatives were cognitively and
behaviorally prepared, emotional preparedness was
challenging, as described by one participant: “You
know it’s happening but you can’t prepare for it; you
don’t want it to happen. I’m not prepared for her not
to be here, to never see her again. I’m not prepared
for that”(ID14; Breen et al., 2018, p. 1476).
Impact of context on meaning and process of pre-
loss grief
The third theme impact of context on meaning and
process of pre-loss grief comprised four descriptive
themes: specific contextual factors, influence of health-
care practitioners, effective communication, and emo-
tional support as essential for carer well-being. This
theme reflected how the experience of pre-loss grief
may have been impacted by contextual factors.
Findings from a Canadian study revealed that for
some relatives, during the pre-death phase their
experience was one of “personal growth and valor-
ization”(Dumont et al., 2008, p. 1051), while for
others it was “experienced as disruptive and as having
exerted a rather negative influence on the grieving
process”(Dumont et al., 2008, p. 1056). Whether rela-
tives in this study experienced the former or latter
was potentially influenced by contextual factors such
as characteristics of both the patient and their relative,
illness symptoms, relationship between the relative
and patient or other family members, and support
and circumstances surrounding death. Authors con-
cluded that ultimately these contextual factors could
not only influence the pre-death experience but also
bereavement outcomes (Dumont et al., 2008).
Nine studies showed that the input from healthcare
practitioners could potentially influence the pre-loss
grief processes. For example, some relatives found it
helpful when healthcare practitioners provided clear
information on the reality of the poor prognosis,
guidance surrounding how the illness would unfold at
the end, or someone to talk to (Cagle & Kovacs, 2011;
Clukey, 2007; Hebert et al., 2009; Pusa et al., 2012;
Toyama & Honda, 2016; Waldrop, 2007). One study
emphasized that regular supportive and therapeutic
contact between healthcare practitioners and relatives
during end-stage cancer care could assist in normaliz-
ing pre- and post-loss grief (Waldrop, 2007).
Similarly, findings from another study showed that
emotional preparedness would be better facilitated if
healthcare practitioners provided prognostic informa-
tion in a way that was sensitive to relatives’emotional
needs (Hebert et al., 2009). Others, however, reported
a lack of supportive care from healthcare practitioners,
and it was suggested by relatives that healthcare prac-
titioners’focus was on the patient’s needs and not the
carer’s needs (Clukey, 2007; Pusa et al., 2012; Toyama
& Honda, 2016; Waldrop, 2007). Pusa et al. (2012)
described how insufficient understanding from health-
care practitioners resulted in feelings of being over-
loaded, uninformed, invisible and isolated. A lack of
clear communication from healthcare practitioners
surrounding the patient’s poor prognosis and declin-
ing health was perceived to contribute to relatives’
feelings of uncertainty and reported by relatives as
“one of the most neglected aspects of end-of-life care”
(Hebert et al., 2009, p. 9).
The physical environment in which palliative care
was provided was also seen as impacting on pre-loss
grief. For example, a participant described the hospice
environment as:
An amazing place. The people, the people who
worked there, the aides, I thought were amazing in
the way they handled people physically and
emotionally …they could read where pain was in a
person’s face and that sort of thing …(Bouchal et al.,
2015, p. 55)
Similarly, delivery of medical equipment and medi-
cations was found to ease relatives’burden, or the
financial relief provided by hospice supplying medica-
tions was appreciated. Other ways of being supportive
included being available 24 h a day by telephone
(Clukey, 2007).
Discussion
This qualitative systematic review and thematic syn-
thesis has provided insight into the pre-loss experien-
ces among relatives of palliative cancer patients.
Findings described how relatives transitioned through
lived experiences during end-stage cancer, and that
DEATH STUDIES 11

the meanings they attached to these experiences influ-
enced how they experienced pre-loss grief.
Assessment of methodological quality of the studies
showed that ten of the selected studies scored in the
high range (above a score of 7), and the remaining
studies scored in the medium (n¼2) or low (n¼1)
range. Whilst this outcome signifies a robust scientific
approach in the majority of selected studies, flaws and
methodological weaknesses were noted across all
selected studies reflecting a need for greater rigor
(especially in the three studies that had moderate or
low scores).
Although several studies in the current review
viewed the concept of preparedness as central to the
pre-loss grieving process (Bouchal et al., 2015; Breen
et al., 2018; Hebert et al., 2009), others reported it to
be only one element of pre-loss experience (Coelho
et al., 2020; Dumont et al., 2008; Pusa et al., 2012). A
systematic review of caregiver studies during end-of-
life caregiving, found that low preparedness for death
was associated with post-loss complicated grief,
depression and anxiety, irrespective of the patients ill-
ness (Nielsen et al., 2016). A more recent American
qualitative study about preparedness of cancer and
dementia caregivers (N¼40), highlighted that pre-
paredness was an important aspect of pre-loss grief
due to its association with Prolonged Grief Disorder
(Singer & Papa, 2021). Findings indicated that pre-
paredness for loss could be enhanced by reducing
uncertainty before the loss (present uncertainty) and
after the loss (future uncertainty). According to study
authors, some of these findings provided new insights
into preparedness such as the identification of rela-
tionship quality between the patient and the relative
as being an important factor.
Uncertainty leading to low preparedness for rela-
tives during the pre-loss phase could have been
addressed to some degree by specific supportive inter-
ventions such as effective communication from
healthcare practitioners, as indicated by some studies
in the current review (Breen et al., 2018; Cagle &
Kovacs, 2011; Hebert et al., 2009; Pusa et al., 2012).
However, findings of this review also suggest that
these interventions were few (Clukey, 2007; Coelho
et al., 2020; Pusa et al., 2012; Waldrop, 2007; Werner-
Lin et al., 2020). This is consistent with a Canadian
qualitative study which explored family support needs
within the context of end-of-life cancer care (Nissim
et al., 2017). Even though Nissim et al. (2017) found
that carers needed support around decision-making,
information about death and dying, and emotional
distress, this support was limited, and carers
experienced fear and distress in the pre-loss phase.
Similarly, Nielsen et al. (2017) hypothesized that
severe pre-loss grief in carers was partially a result of
an information mismatch between carers’perceptions
of prognostic information, and the healthcare practi-
tioners’lack of adaptation of prognostic information
to an already stressful situation. On this basis, it was
suggested that pre-loss information was individualized
to a family’s information preferences and coping style
(Tarberg et al., 2019). Explanations surrounding a lack
of support from healthcare practitioners directly tar-
geting pre-loss grief are unclear. It may be suggested
that healthcare practitioners find this an emotionally
challenging aspect of their role and feel ill-equipped
to deliver this care in practice (Tarberg et al., 2019),
or that nursing staff can experience difficult emotions
when providing end-stage cancer care (Dobrina et al.,
2020). For example, an Italian qualitative study of
nursing staff caring for end-stage cancer patients in a
hospice setting, found that nurses often felt emotional
burden when they were nursing patients with whom
they felt close, or frustration if they couldn’t relieve
patient suffering which triggered the perception of
being limited in their skills (Dobrina et al., 2020).
Findings emphasized the importance of communica-
tion between healthcare practitioners, and structured
psychological support for palliative care providers, in
order to alleviate emotional burden and ease ethical
dilemmas (Connolly et al., 2015).
Consistent with recent findings (Vasileiou et al.,
2020), evidence from the current review suggests that
other contextual factors including physical environ-
ment may have a key role to play in facilitating emo-
tional preparedness. Hospices in the United Kingdom
and Canada are usually independent facilities provid-
ing in-patient and community-based palliative care
(Bainbridge et al., 2018). Authors in some included
studies in the current review highlighted the essential
role played by hospices in providing practical support
(such as financial support and medication) and psy-
chological support (Cagle & Kovacs, 2011; Clukey,
2007). One study in the current review found that
hospice staff being present was akin to a skill involv-
ing active listening, concern, and empathy (Clukey,
2007); whilst another reported that hospice team
members played a vital role in supporting patients
during end-stage cancer care (Cagle & Kovacs, 2011).
Other literature has shown that hospices address
aspects of palliative care that families value
(Bainbridge et al., 2018), whereas acute settings are
inadequate for end-of-life care due to factors includ-
ing lack of privacy. It has been reported that such
12 A. FEE ET AL.

settings are not conducive to end-of-life conversations
(Brereton et al., 2012).
Irrespective of the context and setting in which pal-
liative care is provided, pre-loss and carer support
both form part of the ethos for palliative care and
their efforts are often indispensable to the healthcare
system (Grande et al., 2009), therefore the need for
tailored interventions to provide this support are
important. Such interventions could facilitate end-of-
life preparedness and transition, and may reduce the
risk of post-loss complications within palliative cancer
care (Patinadan et al., 2020).
It has been previously asserted that the impact of
pre-loss grief on relatives may vary, depending on the
type of illness and end-of-life trajectory (Singer et al.,
2021). In their comparison of pre-loss grief between
relatives of cancer and relatives of dementia patients,
Singer et al. (2021) found that more relatives of
advanced dementia patients reported clinically rele-
vant symptoms of pre-loss grief than relatives of can-
cer patients. By contrast, others have identified
similarities of pre-loss grief between caregivers of can-
cer and dementia patients (Johansson & Grimby,
2012), thus findings of the current review could
potentially be relevant for other disease trajectories.
However, given the dearth of literature in this area
(Treml et al., 2021), further research is warranted.
Findings of the current review suggest that relatives
need information about death and dying, and support
for emotional distress. Healthcare practitioners who
have appropriate skills and training, along with a con-
ducive physical environment, such as a hospice set-
ting, can contribute to relatives’preparedness when a
loved one/family member is at end-of-life, through
the provision of practical or psychological support
(Cagle & Kovacs, 2011; Clukey, 2007). This is import-
ant given that formalized support is currently available
in specialist palliative care settings and services (such
as hospice); however, it is much less likely to be avail-
able in acute care and nursing home settings, where
most patients and relatives will access care and sup-
port. Thus, future research about pre-loss grief within
cancer care should focus on acute and nursing
home settings.
Strengths of the review include the application of a
validated assessment tool (JBI-QARI framework) to
ensure methodological quality of the included studies,
and the use of a recognized reporting framework
(ENTREQ) which added transparency in reporting
findings. However, some studies may have been
missed as this review only included studies in the
English language. The review was limited by an
overwhelmingly female sample; however, this may be
because women are more likely to be family carers
than men. Finally, low rates of minority participants
is also a limitation of the review.
Our review contributes to current research about
pre-loss grief, specifically around the concept of pre-
paredness of relatives, and factors that can facilitate
preparedness to support pre-loss grief. Findings indi-
cate that relatives transitioned through lived experien-
ces during end-stage cancer, and that meanings
attached to these experiences influenced how they
experienced pre-loss grief. Preparedness was found to
be important in reducing uncertainty and stress, how-
ever preparedness could be influenced by context,
such as the physical environment in which end-of-life
care was provided. Participants in selected studies
described a need for information about death and
dying, and support for emotional distress, yet such
support from healthcare practitioners was often lim-
ited. This suggests a need to raise awareness about
preparedness and pre-loss grief among palliative care
providers; and to increase recognition of the impact
of end-of-life care among healthcare practitioners.
This may enable healthcare practitioners to adequately
assess carer/relative’s support needs during the end-
stage phase and allow for more targeted support
within cancer care.
Disclosure statement
No potential conflict of interest was reported by
the author(s).
Funding
A small grant was received from Cruse Bereavement Care
and Macmillan Cancer Support, Northern Ireland, in sup-
port of this research.
ORCID
Anne Fee http://orcid.org/0000-0002-5685-8079
Jeff Hanna http://orcid.org/0000-0002-8218-5939
Felicity Hasson http://orcid.org/0000-0002-8200-9732
References
Åberg, A. C., Sidenvall, B., Hepworth, M., O’Reilly, K., &
Lithell, H. (2004). Continuity of the self in later life:
Perceptions of informal caregivers. Qualitative Health
Research,14(6), 792–815. https://doi.org/10.1177/
1049732304265854
Anngela-Cole, L., & Busch, M. (2011). Stress and grief
among family caregivers of older adults with cancer: A
DEATH STUDIES 13

multicultural comparison from Hawai’i. Journal of Social
Work in End-of-Life & Palliative Care,7(4), 318–337.
https://doi.org/10.1080/15524256.2011.623460
Bainbridge, D., Giruparajah, M., Zou, H., & Seow, H.
(2018). The care experiences of patients who die in resi-
dential hospice: A qualitative analysis of the last three
months of life from the views of bereaved caregivers.
Palliative & Supportive Care,16(4), 421–431. https://doi.
org/10.1017/S147895151700058X
Bouchal, S. R., Rallison, L., Moules, N. J., & Sinclair, S.
(2015). Holding on and letting go: Families’experiences
of anticipatory mourning in terminal cancer. OMEGA -
Journal of Death and Dying,72(1), 42–68. https://doi.org/
10.1177/0030222815574700
Breen, L. J., Aoun, S. M., O’Connor, M., Howting, D., &
Halkett, G. K. B. (2018). Family caregivers’preparations
for death: A Qualitative Analysis. Journal of Pain and
Symptom Management,55(6), 1473–1479. https://doi.org/
10.1016/j.jpainsymman.2018.02.018
Brereton, L., Gardiner, C., Gott, M., Ingleton, C., Barnes, S.,
& Carroll, C. (2012). The hospital environment for end
of life care of older adults and their families: An integra-
tive review. Journal of Advanced Nursing,68(5), 981–993.
https://doi.org/10.1111/j.1365-2648.2011.05900.x
Burke, L. A., Clark, K. A., Ali, K. S., Gibson, B. W.,
Smigelsky, M. A., & Neimeyer, R. A. (2015). Risk factors
for anticipatory grief in family members of terminally ill
veterans receiving palliative care services. Journal of
Social Work in End-of-Life & Palliative Care,11(3–4),
244–266. https://doi.org/10.1080/15524256.2015.1110071
Cagle, J. G., & Kovacs, P. J. (2011). Informal caregivers of
cancer patients: Perceptions about preparedness and sup-
port during hospice care. Journal of Gerontological Social
Work,54(1), 92–115. https://doi.org/10.1080/01634372.
2010.534547
Cheung, D. S. K., Ho, K. H. M., Cheung, T. F., Lam, S. C.,
& Tse, M. M. Y. (2018). Anticipatory grief of spousal and
adult children caregivers of people with dementia. BMC
Palliative Care,17(1), 1–10. https://doi.org/10.1186/
s12904-018-0376-3
Clukey, L. (2007). “Just be there”. Hospice caregivers’pre-
loss mourning experience. Journal of Hospice & Palliative
Nursing,9(3), 150–158. https://doi.org/10.1097/01.NJH.
0000269992.13625.00
Coelho, A., & Barbosa, A. (2017). Family anticipatory grief:
An integrative literature review. The American Journal of
Hospice & Palliative Care,34(8), 774–785. https://doi.org/
10.1177/1049909116647960
Coelho, A., de Brito, M., Teixeira, P., Frade, P., Barros, L.,
& Barbosa, A. (2020). Family caregivers’anticipatory
grief: A conceptual framework for understanding its mul-
tiple challenges. Qualitative Health Research,30(5),
693–703. https://doi.org/10.1177/1049732319873330
Connolly, S., Galvin, M., & Hardiman, O. (2015). End-of-
life management in patients with amyotrophic lateral
sclerosis. The Lancet. Neurology,14(4), 435–442. https://
doi.org/10.1016/S1474-4422(14)70221-2
Dobrina, R., Chialchia, S., & Palese, A. (2020). “Difficult
patients”in the advanced stages of cancer as experienced
by nursing staff: A descriptive qualitative study. European
Journal of Oncology Nursing: The Official Journal of
European Oncology Nursing Society,46(April), 101766.
https://doi.org/10.1016/j.ejon.2020.101766
Dumont, I., Dumont, S., & Mongeau, S. (2008). End-of-life
care and the grieving process: Family caregivers who
have experienced the loss of a terminal-phase cancer
patient. Qualitative Health Research,18(8), 1049–1061.
https://doi.org/10.1177/1049732308320110
Evans, C., Tweheyo, R., McGarry, J., Eldridge, J., Albert, J.,
Nkoyo, V., & Higginbottom, G. M. A. (2019). Seeking
culturally safe care: A qualitative systematic review of the
healthcare experiences of women and girls who have
undergone female genital mutilation/cutting. BMJ Open,
9(5), e027452. https://doi.org/10.1136/bmjopen-2018-
027452
Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L.,
Addington-Hall, J., Payne, S., & Todd, C. (2009).
Supporting lay carers in end of life care: Current gaps
and future priorities. Palliative Medicine,23(4), 339–344.
https://doi.org/10.1177/0269216309104875
Hebert, R. S., Schulz, R., Copeland, V. C., & Arnold, R. M.
(2009). Preparing family caregivers for death and
bereavement. Insights from caregivers of terminally ill
patients. Journal of Pain and Symptom Management,
37(1), 3–12.
Holm, M., Alvariza, A., F€
urst, C. J., €
Ohlen, J., & Årestedt,
K. (2019). Psychometric evaluation of the anticipatory
grief scale in a sample of family caregivers in the context
of palliative care. Health and Quality of Life Outcomes,
17(1), 1–11. https://doi.org/10.1186/s12955-019-1110-4
Hottensen, D. (2010). Anticipatory grief in patients with
cancer. Clinical Journal of Oncology Nursing,14(1),
106–107. https://doi.org/10.1188/10.CJON.106-107
Johansson, Å. K., & Grimby, A. (2012). Anticipatory grief
among close relatives of patients in hospice and palliative
wards. The American Journal of Hospice & Palliative
Care,29(2), 134–138. https://doi.org/10.1177/
1049909111409021
Krikorian, A., Maldonado, C., & Pastrana, T. (2020).
Patient’s perspectives on the notion of a good death:
A systematic review of the literature. Journal of Pain and
Symptom Management,59(1), 152–164. https://doi.org/10.
1016/j.jpainsymman.2019.07.033
Lage, A., & Crombet, T. (2011). Control of advanced can-
cer: The road to chronicity. International Journal of
Environmental Research and Public Health,8(3), 683–697.
https://doi.org/10.3390/ijerph8030683
Lindauer, A., & Harvath, T. A. (2014). Pre-death grief in
the context of dementia caregiving: A concept analysis.
Journal of Advanced Nursing, 70(10), 2196–2207.
Lockwood, C., Munn, Z., & Porritt, K. (2015). Qualitative
research synthesis: Methodological guidance for system-
atic reviewers utilizing meta-aggregation. International
Journal of Evidence-Based Healthcare,13(3), 179–187.
https://doi.org/10.1097/XEB.0000000000000062
Moon, P. J. (2016). Anticipatory grief: A mere concept? The
American Journal of Hospice & Palliative Care,33(5),
417–420. https://doi.org/10.1177/1049909115574262
National Health Service England (2018). Definition of carer.
NHS. https://www.england.nhs.uk/commissioning/comm-
carers/carers/
Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., &
Guldin, M. B. (2016). Do we need to change our
14 A. FEE ET AL.

understanding of anticipatory grief in caregivers? A sys-
tematic review of caregiver studies during end-of-life
caregiving and bereavement. Clinical Psychology Review,
44,75–93. https://doi.org/10.1016/j.cpr.2016.01.002
Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Vedsted, P.,
Bro, F., & Guldin, M. (2017). Preloss grief in family care-
givers during end-of-life cancer care: A nationwide popu-
lation-based cohort study. Psycho-oncology,26(12),
2048–2056. https://doi.org/10.1002/pon.4416
Nissim, R., Hales, S., Zimmermann, C., Deckert, A.,
Edwards, B., & Rodin, G. (2017). Supporting family care-
givers of advanced cancer patients: A focus group study.
Family Relations,66(5), 867–879. https://doi.org/10.1111/
fare.12291
NVivo (QSR): QSR International. (2013). NVivo qualitative
data analysis software (12th ed.). QSR International.
Patinadan, P. V., Tan-Ho, G., Choo, P. Y., & Ho, A. H. Y.
(2020). Resolving anticipatory grief and enhancing dig-
nity at the end-of life: A systematic review of palliative
interventions. Death Studies,1–14. https://doi.org/10.
1080/07481187.2020.1728426
Pusa, S., Persson, C., & Sundin, K. (2012). Significant
others’lived experiences following a lung cancer trajec-
tory: from diagnosis through and after the death of a
family member. European Journal of Oncology Nursing :
The Official Journal of European Oncology Nursing
Society,16(1), 34–41. https://doi.org/10.1016/j.ejon.2011.
02.004
Sand, L., & Strang, P. (2006). Existential loneliness in a pal-
liative home care setting. Journal of Palliative Medicine,
9(6), 1376–1387. https://doi.org/10.1089/jpm.2006.9.1376
Singer, J., & Papa, A. (2021). Preparedness for the death of
an elderly family member: A possible protective factor
for pre-loss grief in informal caregivers. Archives of
Gerontology and Geriatrics,94, 104353. https://doi.org/10.
1016/j.archger.2021.104353
Singer, J., Shrout, M. R., & Papa, A. (2021). Rates and pro-
spective psychosocial correlates of pre-loss grief in cancer
and dementia family members. Journal of Health
Psychology.https://doi.org/10.1177/1359105321995945
Tarberg, A. S., Kvangarsnes, M., Hole, T., Thronaes, M.,
Madssen, T. S., & Landstad, B. J. (2019). Silent voices:
Family caregivers’narratives of involvement in palliative
care. Nursing open,6(4), 1446–1454. https://doi.org/10.
1002/nop2.344
Thomas, J., & Harden, A. (2008). Methods for the thematic
synthesis of qualitative research in systematic reviews.
BMC Medical Research Methodology,8, 45. https://doi.
org/10.1186/1471-2288-8-45
Tong, A., Flemming, K., McInnes, E., Oliver, S., & Craig, J.
(2012). Enhancing transparency in reporting the synthesis
of qualitative research: ENTREQ. BMC Medical Research
Methodology,12(1), 181–188. https://doi.org/10.1186/
1471-2288-12-181
Toyama, H., & Honda, A. (2016). Using narrative approach
for anticipatory grief among family caregivers at
home. Global Qualitative Nursing Research,3,
2333393616682549. https://doi.org/10.1177/23333936166
82549
Treml, J., Schmidt, V., Nagl, M., & Kersting, A. (2021). Pre-
loss grief and preparedness for death among caregivers of
terminally ill cancer patients: A systematic review. Social
Science & Medicine,284, 114240.
Vasileiou, K., Smith, P., & Kagee, A. (2020). “The way I am
treated is as if I am under my mother’s care”: Qualitative
study of patients’experiences of receiving hospice care
services in South Africa. BMC Palliative Care,19(1), 1–9.
https://doi.org/10.1186/s12904-020-00605-1
Vergo, M. T., Whyman, J., Li, Z., Kestel, J., James, S. L.,
Rector, C., & Salsman, J. M. (2017). Assessing prepara-
tory grief in advanced cancer patients as an independent
predictor of distress in an American population. Journal
of Palliative Medicine,20(1), 48–52. https://doi.org/10.
1089/jpm.2016.0136
Waldrop, D. P. (2007). Caregiver grief in terminal illness
and bereavement: A mixed-methods study. Health &
Social Work,32(3), 197–206. https://doi.org/10.1093/hsw/
32.3.197
Werner-Lin, A., Young, J. L., Wilsnack, C., Merrill, S. L.,
Groner, V., Greene, M. H., & Khincha, P. P. (2020).
Waiting and “weighted down”: The challenge of anticipa-
tory loss for individuals and families with Li-Fraumeni
Syndrome. Familial Cancer,19(3), 259–268. https://doi.
org/10.1007/s10689-020-00173-6
World Health Organization. (2021). Cancer fact sheet.
World Health Organization. https://www.who.int/news-
room/fact-sheets/detail/cancer
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