Grief Types in Cancer Nursing Care
Grief Types in Cancer Nursing Care
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https://doi.org/10.1016/j.ejon.2022.102260
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Highlights
• Complexity is present when caring for patients and families experiencing grief
and bereavement during cancer illness.
• This study identified multiple nurse interventions targeted patients and families
experiencing grief and bereavement during cancer illness.
Abstract
Purpose
Grief and bereavement is often present among patients and families during courses of cancer. Offering support for both
patients and families is essential in the context of cancer nursing. Present scoping review offers an overview of existing
knowledge, which can be used for inspiration in cancer-nursing. Hence, the objective of this study was to identify
understandings of grief and bereavement, which is present in a cancer-nursing context and to develop insight on
existing knowledge about nursing interventions targeted patients and their families’ experiences of grief and
bereavement due to cancer illness.
Method
https://www.sciencedirect.com/science/article/pii/S1462388922001685#:~:text=Nursing care and nurses’ understandings of grief and bereavement a… 1/42
12/05/2024, 00:54 Nursing care and nurses’ understandings of grief and bereavement among patients and families during cancer illness and death …
The scoping review is conducted, inspired by the methodology of Joanna Briggs Institute. Sources of evidence are
retrieved from a large number of databases and resources.
Results
Twenty-two studies are included in the scoping review. The studies are retrieved from eight different countries.
Findings are mapped in nine categories. Eight categories related to nursing care targeted patients and/or families
experiencing grief and/or bereavement; One category related to understandings of grief and/or bereavement targeted
patients and families.
Conclusion
Nursing interventions to support patients and their families during grief and bereavement covers a broad spectrum of
interventions. E.g. communication; using artwork; cultural and spiritual care; bereavement care; supporting coping
strategies. Different models and theoretical understandings were identified. E.g. The dual process model of coping with
bereavement; A Divorced Family-focused Care Model; Family Strengths-Oriented Therapeutic Conversation (Fam-
SOTC); and understandings of children's grieving process.
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Keywords
Grief; Bereavement; Cancer; Nursing; Patient; Family
1. Introduction
Grief and bereavement are dominant phenomena among patients within the context of nursing cancer care (Madsen et
al., 2019; Marcussen et al., 2019). According to the World Health Organization (WHO), cancer is a leading course of
death worldwide with nearly 10 million deaths in 2020. Internationally, approximately 9 million people were
diagnosed with a cancer illness in 2020 (World Health Organisation, 2022). The large amount of people and their
families often need nursing care during the illness trajectory and hence underline the necessity of nurses having
competencies to provide this support, when needed. WHO stress that palliative care takes a team approach to support
patients and their families and the aim of palliative care is to improve the quality of life among patients and their
families – who are facing problems, e.g. related to bereavement and psychological and existential problems, associated
with life threatening illness (World Health Organisation, 2020).
Bereavement and grief are two common emotions caused by losing something valuable in your life. The word
“bereavement” is associated with experiencing the death of a person, with whom you had a close relation (Cambridge
Dictionary, 2022a). The word “grief” is described as a very great sadness, especially experienced at the death of
someone (Cambridge Dictionary, 2022b). In the context of palliative care – and hence nursing care - it is therefore
important also to include an awareness that the support need a broader focus related to grief, as it may involve other
areas in life than existential and psychological problems related to death. A theoretical perspective on loss, grief and
bereavment, often used in nursing bereavement care, is the theories of Stroebe and Schut (Stroebe et al., 2008; Stroebe
and Schut, 2015). According to Stroebe and Schut, loss is associated with grief and bereavement. The two phenomena,
grief and bereavement, are the individual ways human being express their losses, depending on the meaning
associated with the loss, and hence challenges, which this loss evokes. Bereavement is understood as a dual process of
coping with the stressors of “the process of loss” and “the process of restitution”, and a person's mental health is
depending on the abilities to oscillate between these stressors (Stroebe et al., 2008; Stroebe and Schut, 2015).
In regards of bereavement care it is important to notice that the WHO has classified a new diagnosis “Prolonged grief
disorder” (PGD), within their international classification of diseases (Deloitte & The Danish National Center for Grief,
2016; World Health Organisation, 2018). This diagnosis defines PGD as a disturbance including a persistent and
pervasive grief response for a long period (at least 6 months) following a loss. (Deloitte & The Danish National Center
for Grief, 2016; World Health Organisation, 2018). This new diagnosis underlines the necessity of developing nursing
competences to prevent or identify and alleviate symptoms related to PGD – either in the context of nursing or initiate
bereavement support in other professions related to the palliative care team approach.
From research it is identified, that both patients and families experience multiple losses during cancer illness and
nursing care is often needed (Coyne et al., 2020; Madsen et al., 2018). Research has highlighted, that cancer influences
both the person with cancer and their family equally with significant burden (Coyne et al., 2020). It is also well known
that family caregivers are overburdened emotionally and physically, and some studies have demonstrated that this
overload extends beyond the period of mourning (Ferrario et al., 2004). Family members are challenged in many ways
throughout cancer and death, for instance: Parents must endure profound suffering in their bereavement following a
child's death due to cancer (Denhup, 2017). Children experiencing parental cancer, are challenged in the lack of
parents, well-being and the loss of daily routines (Elmose, 2011; Hauken et al., 2018; Lundberg et al., 2018). Also,
double bereavement has been identified among children when a divorced parent dies (Marcussen et al., 2020). Both
children and young adults losing a parent are found to be at risk for mental health problems, such as depression and
distressing symptoms (Bugge et al., 2008; Marcussen et al., 2020). Research also stress, that siblings needs of support
when a brother or sister dies from cancer (Nolbris and Hellström, 2005). Also, research has identified grandparents'
challenged grieving in relation to childhood cancer (Moules et al., 2012).
Young adults losing a divorced parent to death are found in research to have elevated risk of prolonged grief compared
to losing a non-divorced parent (Marcussen et al., 2021) and a meta-analysis has found a prevalence of prolonged grief
amongst bereaved adults to be 9,8% (Lundorff et al., 2017). Although it is a common experience to experience an older
spouse death, nearly one of four bereaved older spouses are challenged in the experience of prolonged grief or chronic
depression (Davidow et al., 2022). Even though the loss of a close loved one to death is the most recognized kind of
grief, it has to be noticed that grief emerges from many experiences of loss such as loss of family, home, function or
ability (Shear, 2015). However, bereaved persons reactions related to grief and bereavement have to be seen in the
perspective of the persons gender, age, personality, life conditions, vulnerability and the circumstances related to the
loss (Marcussen et al., 2015; Mogensen and Engelbrekt, 2018; Nielsen et al., 2016b).
Experiencing a life situation dominated with grief and bereavement can be defined as a challenging transition. During
this transition process the support from nurses, affect the outcome of wellbeing and mental health among family
members (Madsen et al., 2019a, Madsen et al., 2019b; Marcussen et al., 2019). Nurses' ability to identify challenging
transitions and grief issues in families is an important competence in order to initiate support for families – which
implies caring on the levels of both individuals and as a family group (Nielsen et al., 2016a). For instance, research
identified that spouses are challenged in balancing between ‘deep grieving’ and ‘moving forward’ in order to
successfully create a new life without their partner (Holtslander et al., 2011), and other spouses’ grief experiences
involves transitions in regards of coping with own chaotic emotions and struggling to re-join with life after the death
of a of their loved one (Madsen et al., 2018).
Although, it seems to be important for most nurses to provide bereavement and grief support towards different kind of
families experiencing loss throughout cancer, some studies have identified a lack of professional care, when it was
needed among families (Birtwistle et al., 2002; Marcussen et al., 2020; McCue and Bonn, 2003; Russell et al., 2018).
Also, nurses can be uncomfortable offering support in fear of saying the wrong things or becoming emotional (Ruden,
1996). Nurses are also at risk of developing grief and bereavement themselves, while offering bereavement support for
patients and families - and in its extreme consequence develop cumulative grief or compassion fatigue (Houck, 2014;
Phillips and Welcer, 2017). Hence, when offering nursing care targeted grief and bereavement, nurses need the
competence to recognize when assistance is needed (Houck, 2014; Phillips and Welcer, 2017).
Present scoping review strives to contribute to the development nursing care targeted grief and bereavement among
patients and their families during cancer illness. Therefor this scoping review presents an overview by mapping
existing knowledge of both nurses’ understandings of grief and bereavement and existing knowledge of nursing care
targeted patients and their families throughout the course of cancer illness and cancer death. Previously no reviews
have taken this perspective in the context of cancer nursing.
The scoping review explore the following research question: What kind of evidence about nursing care and nurses’
understanding of grief and bereavement exists in research targeted patients and their families throughout grief and
bereavement due to the course of cancer illness and death?
2. Methods
2.1. Design
A scoping review was conducted to address the identified research question, because this method is suitable, when you
strive to create an overview of existing knowledge. The method is inspired by the methodology of Joanna Briggs
Institute, and it aims to create an overview on existing knowledge (Khalil et al., 2016; Peters et al., 2015). This method
is suitable for broad and complex research areas and consists of five stages: 1. Identifying the research question 2.
Identifying relevant studies 3. Study selection 4. Presenting the data. This stage consists of charting the data in a
tabular and narrative format. In a JBI scoping review the results may be presented as a “map” of the data in a logical,
diagrammatic or tabular form, or in a descriptive format. The reviewers decide what rationally and clearly illustrate the
results in terms of the object. For instance, the extracted results may be classified under main conceptual categories 5.
Collating the results, which involves identifying the implications of the study findings for policy, practice or research
(Khalil et al., 2016). Due to the absence of the methodological quality appraisal in scoping reviews it may not be able to
develop recommendations for practice. However, suggestions could be made based on the conclusions (Khalil et al.,
2016; Peters et al., 2015). In present scoping review critical appraisal of the included studies was not conducted.
Inclusion Exclusion
Participants: Participants
Inclusion Exclusion
Nursing care for patients and families in all ages Patients and families' describing own experiences of loss and bereavement not
related to nursing care.
Nursing care for all kinds of family structures Nurses' own reactions and experiences of loss and bereavement in relation to care
Context: Studies including a mix of health care professionals without a specific result related
to nursing care
Cancer
Nursing interventions
Methods:
Year:
1995 to 2021
Language:
The review question was analyzed and divided into three aspects; bereavement, nursing, and cancer. To identify
keywords to each aspect the first stage was a limited search of Cinahl Complete as the most relevant database
(Aromataris and Riitano, 2014). Keywords and synonyms were then determined.
A search protocol was conducted. Block search as strategy was used as preferred method, when possible. In the
resources where block searches were not supported, searches were conducted as systematic as possible. To build the
search strategy the limited search were tested in Cinahl Complete including variations of text words and index terms
based on the review question. This strategy was translated to reflect the rest of the resources. To specify the search
string in the large databases (Embase and Scopus) the searches were conducted only in the fields: title, abstract and
keyword. The search terms were translated to Danish, Swedish and Norwegian for the databases and resources not in
English.
The search strategy included studies published from 1995 and forward. The year 1995 was chosen, because around this
year Stroebe and Schut presented a new thinking of bereavement understood as the dual process of coping with
bereavement, in bereavement research (Stroebe and Schut, 1999). Studies were included due to those perspectives as
well as other perspectives.
Studies published from 1995 and forward was identified from searches in all selected databases in the period of 28th of
May to 30th of June 2020. The searches were updated the 1st of October to the 5th of October 2021 in following
databases: Cinahl Complete, Embase, APA PsycInfo, Scopus, Academic Search Premier, Bibliotek. dk og Idunn. no. The
remaining databases were either ceased (SveMed+, Den Danske Forskningsdatabase, and OpenGrey) or not available at
the time searches were updated (OpenDissertations and Open Access Thesis and Dissertations (OATD)). Search
limitations have been set in relation to year of publication and language, where it was possible. Table 2 presents two
examples of search strings. The search strategy was conducted and discussed in the research team (in collaboration
with a librarian).
Cinahl (bereavement OR grief OR mourning OR chronic sorrow OR grieve OR mourn) AND (nurse Published Date: 19950101-;
Complete OR nursing) AND (cancer OR neoplasm OR oncology) Language: Danish, English,
Norwegian, Swedish
First in total 2149 hits were identified (June 2020) and after removing duplicates 1227 hits were screened based on title
and abstract. 43 studies were read in full text and 21 met the inclusion criteria and were included in the scoping
review. Second, the updated search (October 2021) revealed 146 new hits. 31 were duplicates and 103 were excluded at
title and abstract level. After reading full text of the four studies, one was included in the scoping review.
When doubt occurred, the specific study was discussed among first and last author until agreement was obtained.
To understand how nursing target patients and families experiences of grief and bereavement is provided, it is
important to know about the different contexts of which the studies were conducted. The 22 included studies were
placed in following contexts: 16 studies from cancer nursing/oncology nursing/cancer care/oncology nursing; 4 studies
from pediatric oncology/pediatric intensive care unit/neonatal intensive care unit/pediatric bone marrow transplant
unit/pediatric palliative care; 1 study from hospice and 1 study from a specialized palliative home care unit.
Study Author, Study type and Context Findings: Grief and Findings: Nursing care and
number year, population (P) bereavement nursing interventions
country
USA P: Not available Intensive Care Mile's model of parental Provide families with empathy
Unit, Neonatal grief
Intensive Care
2 Bailey Review Oncology Enabling mourning and Holistic care for patients and
(1997) Nursing grieving through art and families
creative expression
To incorporate art
Nursing guidelines
Study Author, Study type and Context Findings: Grief and Findings: Nursing care and
number year, population (P) bereavement nursing interventions
country
process
5 Leboeuf Case study Oncology Grief (Numerous losses) Caring for patients with brain
(2000) nursing tumor and family nursing
(Beliefs, perceptions)
8 Rancour Literature review Oncology Grief as a normal process Nurses can use letter writing as a
and Brauer when loosing body parts means of assisting patients through
(2003) and functions the grief process associated with
body image alterations
Case study
Study Author, Study type and Context Findings: Grief and Findings: Nursing care and
number year, population (P) bereavement nursing interventions
country
9 Devlin Review of literature Cancer and Grief and distress Artwork from children
(2006) palliative care expressed through
artwork
10 Longfield Literature review Oncology Grief and bereavement Communicate with children and
and process among children parents regarding a parent's
Warnick during the illness terminal prognosis of breast cancer
(2009) trajectory
11 Foster et al. Review Pediatric Loss, grief bereavement, Caring for children with cancer and
(2010) palliative care complicated grief their families
Supporting hopefulness
12 Tuffrey- Focus groups and face-to- Cancer nursing Grief and bereavement Include persons with ID in the
Wijne et al. face interviews among adults with family unit
(2012) intellectual disability
Study Author, Study type and Context Findings: Grief and Findings: Nursing care and
number year, population (P) bereavement nursing interventions
country
13 Gonzalez Review Cancer Grief and the need to Promoting optimism among
(2012) recognize and promote oncology nurses involves:
optimism among patients
14 Darbyshire Individual interviews Pediatric Bereavement and grief A telephone intervention program
et al. (2013) oncology unit when losing a child
16 Rodgers et Semi-structured Oncology Unit Grief and bereavement End of life care
al. (2016) telephone interview
Study Author, Study type and Context Findings: Grief and Findings: Nursing care and
number year, population (P) bereavement nursing interventions
country
process
17 Holtslander Multi-method RCT with Oncology, Bereavement The finding balance intervention
et al. (2016) qualitative and advanced cancer (FBI)
quantiatative data
Canada P: 19 older adult family Complicated bereavement The FBI was easy to use, acceptable
caregiver and of benefit.
18 Shore et al. Review Palliative care, Definition of anticipatory Toolbox of Communication Skills
(2016) oncology grief Nurse Statements
Utilizing empathetic
communication strategies
20 Marcussen Interview Cancer care Grief and bereavement in Divorced family focused cancer care
et al. (2019) relation to children living
in divorced
family/parental critical
illness or death
Study Author, Study type and Context Findings: Grief and Findings: Nursing care and
number year, population (P) bereavement nursing interventions
country
21 Petersen Scoping review Pediatric Grief, bereavement and Nursing targeted parents whose
(2020) oncology end of life support children were diagnosed with
cancer and who faced the end of
life
Instilled hope
(FAM-SOTC)
3.3. Mapping presented in relation to categories, populations groups, nursing care and
understandings of grief and bereavement
Table 4 presents the nine categories developed based on the process of mapping studies in Table 3 and interpretation
extracted findings within this table. This table also includes a mapping of each study representing these categories. The
table shows that the first category “Communication” is the largest, represented by eight studies presenting knowledge
on interventions in cancer nursing. Category two and three called “Bereavement care” and “Models and tools including
interventions” are both represented with four studies. The fourth category “Art” is represented by two studies.
Categories five to eight called “Art”; “Palliative Care”; “Complicated grief”; “Spiritual care”; “Cultural Care”, are each
represented with one study. Category nine called “Understandings of grief and/or bereavement” is represented by nine
studies.
9. Understandings of grief and/or bereavement 9 (Study no. 1, 6, 7, 8, 10, 17, 18, 19, 20)
Table 5 presents a mapping of studies placed in relation to the identified categories. Within this mapping of each
category it is possible to identify whether studies contribute to following three subcategories: Nursing care targeted
bereavement and grief; Nursing care targeted grief; Nursing care targeted bereavement. Further, the table presents a
short overview of central content from each study contributing to each subcategories. Based on the mapping it is also
possible to identify gaps of knowledge – as some of the subcategories are not represented by any studies.
Categories Nursing care targeted grief and bereavement Nursing care targeted Nursing care targeted
grief bereavement
1. Communication General considerations and communication Letter writing as a means of Supportive telephone call after
guidelines when communicating with children assisting patients through the death of the patient to
about parent's impending death (study no. 10) the grief process associated evaluate coping strategies
with body image among families and evaluate
alterations (study no. 8) the nursing care delivered
(study no. 4)
Including people with intellectual disabilities in Grief and promoting Tele-care via telephone
family care and giving information easy to optimism among patients conferences calls, which
understand (study no. 12) (study no. 13) provide support and education
to caregivers (study no. 7)
Categories Nursing care targeted grief and bereavement Nursing care targeted Nursing care targeted
grief bereavement
3. Models and tools Utilized the Calgary Family Assessment Model Assessment tool for No studies identified
including (CFAM) and Calgary Family Intervention Model anticipatory grief and
interventions (CFIM) to guide nursing care targeted family interventions to those
during the course of malign brain tumor. Family experiencing anticipatory
nursing by using the illness narrative approach to grief (study no. 18)
enhance coping strategies (study no. 5)
4. Art Artwork by patients and families can help nurses Art and creative No studies identified
to identify feelings and can be considered a expressions among patients
valuable tool in the communication process enable to mourn and grief
(study no. 9) (study no. 2)
5. Palliative care End-of-life issues that can be anticipated by No studies identified No studies identified
nurses in pediatric palliative care (symptoms,
hopefulness, trying to be a good parent, legacy
making, bereavement among family and
continuing bonds (study no. 11)
7. Spiritual care Spiritual care targeted parents whose children No studies identified No studies identified
faced the end of life (study no. 21)
Categories Nursing care targeted grief and bereavement Nursing care targeted Nursing care targeted
grief bereavement
8. Cultural care Cultural sensitive care in the end of life care when No studies identified No studies identified
facilitating bereavement and grief (study no. 3)
Theme number and Understandings of grief and Understandings of grief Understandings of bereavement
name bereavement in nursing care
9. Understandings of grief Grief and bereavement process Mile's model of parental grief The Hogan's Model of Bereavement
and/or bereavement among children (study no. 10) (study no. 1) (study no. 7)
Table 6 presents a mapping of populations groups represented in the included studies. The way of mapping studies
shows that the largest amount of existing knowledge is related to the groups: “Children/parents” and “Family”. Only
three studies represent nursing care targeted “patients”. Further, the table presents an overview of studies contributing
with understandings of grief and/or bereavement in relation to the three population groups.
Table 6. Mapping study populations regarded nursing care and understandings of grief and bereavement.
Using art as a way of expressing experiences and feelings Supporting letter writing and Assessing and interventions targeted
among children (study no. 9) assisting a grieving process anticipatory grief (study no. 18)
(study no. 8)
Communication guidelines targeted children (study no. 10) Enabling grief and mourning Coping strategies:
through art and creative
expressions (study no. 2, 9)
Using the family focused care model targeted double Supporting grief and Using CFAM, CFIM and the illness
bereavement in divorced families (study no. 20) promoting optimism among narrative approach (study no. 5)
patients (study no. 13)
Follow up program when losing a child (study no. 1) Using art and creative expression to
express feelings and experiences
(study no. 9)
Issues in pediatric palliative care (study no. 11) Including people with intellectual
disabilities in family care and giving
Telecare for parents who have lost a child (study no. 14) Postmortem care:
Spiritual care targeted parents who have lost a child (study Initial grieving process – a bathing and
no. 21) honoring practice (study no. 16)
Mile's model of parental grief (study no. 1) Grief as a healing response to The Hogan's model normal of
loss (study no. 8) bereavement (study no. 7)
A child's coping strategies and understandings of grief and The dual process model of coping
bereavement (study no. 6) (study no. 17)
Grief and bereavement process among children (study no. Definitions of anticipatory grief (study
10) no. 18)
Double bereavement as a consequence of parental divorce in Complicated grief (study no. 19)
combination with the subsequent death of the parent or
development of a parent's critical illness where death is
imminent or expected (study no. 20)
Table 7 presents a mapping of interventions in nursing care and understandings of grief and bereavement in nursing
care. Herby this table presents an overview of extracted interventions in palliative nursing care mapped in relation to
the nine identified categories. Within this table, it is possible to obtain knowledge in regards of specific interventions
recommend within the included studies. In addition, the table maps theoretical understandings of grief and/or
bereavement identified in nine included studies. All extracted text in the table origins from the twenty-two included
studies.
Category 1: Communication
Caring for children of parents who are dying: (Study no. 10)
General considerations:
Talk early; Be honest, Don't be afraid to say “I don't know”; Children grieve in chunks.
Conversation guidelines:
• Create the environment; Explain that there are medicines for comfort; Ask the child if he/she wants to be told what changes to
expect in the parent during the dying proces; Check in with the child frequently; Encourage children to ask questions; Encourage
families to grieve together.
• Cancer nurses should ensure that people with ID in their patients' social circle are included in the family unit and receive adequate
emotional support.
• Using fictional stories can be particularly helpful in eliciting questions and concerns
Offering a theory-driven FAM-SOTC intervention for bereaved family caregivers: (Study no. 22)
• Supporting the cognitive, affective, and behavioral domains of the family member's illness experience.
• The nurse creates a calm and trusting environment and space for the bereaved caregiver to talk about his/her concerns.
• The nurse organizes and uses the therapeutic questions during the conversation depending on the bereaved caregivers'
experience/situation, concerns, and difficulties.
• The nurse acknowledges emotions expressed by the bereaved caregiver and offers hope
• The nurse provides information about resources available from the community and the health care system.
• The nurse uses each opportunity during the conversation to affirm the strengths and potential resources of the bereaved caregiver
Caring (letter writing) for female patients with breast cancer who have lost a breast and grieve due to body alterations: (study no. 8)
• Nurses can use letter writing as a means of assisting patients through the grief process associated with body image alterations
• The process begins with identification of the body part that will be lost or changed. Once the patient has expressed his or her
feelings about the upcoming treatment, he or she is instructed to write a letter (as homework) to the affected body part, describing
his or her reactions to its impending loss.
• When the patient returns for the next session, he or she is asked to read the letter out loud to the healthcare provider. This creates
an additional opportunity for catharsis. At the end of the session, the patient is given another homework assignment. This time,
the threatened part or function “writes” back to the patient.
• At the next meeting, the patient is encouraged to read the letter from the body part to the therapist. This way, an active dialogue is
set up between the patient and the removed or altered body part. This letter writing between the patient and the affected body
part continues until the patient has diverged from his or her previous physical sense of self and is forming a new, more holistic
identity.
• Nurses will need to give themselves permission to be optimistic, and to care with a good sense of humor. Being happy, grateful,
even laughter, may help patients feel that they are in an optimistic environment.
• Meeting the needs of the bereaved family member from the time of death and 1 month after the death.
• Help the bereaved family member to gain knowledge about grief reactions; available bereavement support; Gain knowledge about
the illness and death of their loved one
• Completing the relationship between the bereaved family member and nurse
• Communication with health care providers, visitors and patient. Pain control.
• Life planning
A telephone intervention program for pediatric oncology targeted bereaved parents: (Study no. 17)
• Parent focused objectives included that the program would help maintain parents' sense of connectedness with the hospital
• Making contact in the lead-up to particularly difficult anniversaries or ‘special days’ would be especially appreciated
• A call reminder system individualizing each child's special dates was developed to assist nurses planning bereavement care.
• The designated nurse, representing the oncology team, attended the child's funeral and subsequently telephoned the family at
appropriate times until 13 months after the child's death.
• They would also send personalized cards at special times such as the child's birthday.
• The program linked with other support groups, health professionals, resources and services as necessary.
• Numbness and shock. Examples of nursing care behavior: Genuine empathy and respect; Active listening, touching; Validation of
normalcy of feelings
• Intense grief. Examples of nursing interventions: Patience and support for unhurried grieving; Give telephone number of unit and
invite parent(s) to calf; Remind family they will be contacted again; Give bereavement literature; Provide list of support groups;
Inquire about diet, sleep, exercise; Invite expressions of feelings or experiences
• It must be hard for you; WouId you like to talk? I'll listen; You have a right to your feelings; You will have good days and bad days
and it's okay not to feel guilty for having a good day; Grief is a process that takes as long as you need it to; There is no right way to
grieve and everyone grieves differently – trust your own process
• I know just how you feel; It's such a blessing that he/she died; it was Gods will; You can always have more children; Be strong for
your family; Don't cry; Look how well he/she is doing; You will get over this in time; It's been six months, a year, etc. You must be
over it by now.
• Elements of good bereavement care: Providing good nursing care to the dying patient; Informing progress/prognosis on time and
regularly providing updated information on a patient's condition; Providing physical comfort to the bereaved
Postmortem care – support for families' in the initial grieving: (Study no. 16)
• Immediately after death, it is very important that the nurse express sympathy toward family. A simple statement, such as, “I am
sorry for your loss,” is all that is necessary.
• Assure the family that they may take as much time as needed to be with their deceased loved one and say their goodbyes.
• Explain to the family what will happen now that their loved one has died
• Ask the family if there is anything that is important in their family or culture to do at the time someone dies.
• Invite family members to participate in the bathing if they want to. Assure hesitant family members that you will lead the way and
show them what to do.
• During the bathing: If it seems appropriate, invite family members to share memories and stories from the person's life
• Read aloud the nondenominational honoring words or simply pause to honor the person's life and death, perhaps by saying, “We
pause a moment to honor [patient name]'s life and to acknowledge her/his transition.
Finding balance interventions (FBI) for older adults: (Study no. 17)
• The Findings Balance Interventions (FBI) is a self-administered writing tool, theoretically inspired by the Dual Process Model
(DPM). The FBI describes three processes of finding balance, with specific examples from others in similar situations and writing
exercises to encourage reflection, expression of emotions, and personal and creative ways to find balance in each person's unique
journey
• Deep Grieving consists of activities that address the emotional aspects of grief: The grieving person is asked to write down “my
emotions today”, balanced with a planned “time out” activity that works for them; Another activity in this section is to create a
support system, listing supportive people their phone number, and how they are most helpful
• Walking a Fine Line, consists of planning specific activities that address ways to find a balance between the two extremes of
grieving and looking forward; Specific suggestions for maintaining a balance of daily life include using a weekly calendar to
schedule three activities a week for connecting with the outside world and three different ways to take quiet time for themselves.
• Moving Forward involves taking time to thoughtfully reflect on their caregiving story, and how what they have been through may
also have made them stronger. Suggestions include making a list of activities that give them inner strength, reflecting on their
experience of caregiving and loss and how this story and the lessons they have learned might help others
Family-centered approach in the context of nursing care targeted patients living with malign brain tumor: (Study no. 5)
• The Clinical Nurse Specialist (CNS) uses a family approach inspired by The Calgary Family Assessment Model (CFAM) and The
Calgary Family Intervention Model (CFIM)
• Storying the illness experiences, drawing forth strengths and resources between family members
• Giving information and emotional support and suggesting certain behaviors and tasks.
Using “The Divorced Family–Focused Care Model”: A Nursing Model to Enhance Child and Family Mental Health and Well-Being of
Doubly Bereaved Children - Following Parental Divorce and Subsequent Parental Cancer and Death: (Study no. 20)
• Step 2: Mapping the family divorced family structure and resource persons; Content to access the child
• Step 2: Involve the child and divorced family; Assess needs of professional support
• Step 2: Gather divorced family and network (ex-partner, grand parents, school; Establish support
The anticipatory grief tools that can be utilized with patients and family members:
• Preparatory Grief in Advanced Cancer Patients Scale (PGAC): 31-Item self-assessment scale that measures anticipatory grief in
Greek patients with advanced cancer
• Anticipatory Grief Scale (AGS): 27-Item self-administered scale that measures the bereavement experience of female spouses of
dementia patients
• Marwit-Meuser Caregiver Grief Inventory: 50-Item self-report scale that measures grief response of family caregivers of people
with Alzheimer disease
Managing the anticipatory grief: Toolbox of Communication Skills Nurse Statements. A framework of communication which focuses
on recognizing, responding and validating emotional responses
• U: Understand the emotion; ‘‘It sounds like this has been a long, hard journey for you and your family’’
• R: Respect what the patient, family, or caregiver tells you; ‘‘Your love and devotion to your children and family have been so
evident to the staff”
• S: Support the patient, family, and caregiver; ‘‘You don't need to do this alone. Our team will be here to help you along the way’’
• E: Explore the patient, family, or caregiver concerns; ‘‘Can you tell me more about what worries you?’
Nursing care targeted children - when a parent dies of cancer: (Study no. 6)
• Receive adequate information. Their fears and anxieties must be addressed, and they must be reassured that they are not to blame;
Are carefully listened to. Their feelings must be validated and they must have help with overwhelming feelings; Have
opportunities for involvement and inclusion in death rituals, have healthy grief behaviors modeled to them, and have
opportunities to remember; Continue with their routine activities
• Although the family may meet some or all of these needs, such as allowing the children to participate in planning the funeral, more
formalized interventions, such as grief groups and counseling, may better meet the children's needs. Interventions can and often
should be initiated prior to the parent's death
• Take time to reflect on your own feelings about illness and death.
• Familiarize yourself with death and dying theory; incorporate death and dying into the curriculum.
• Offer hugs when you can be assured they are appropriate; know that hugs can cause tears.
• Boost self-esteem, which can be lowered after a parent's death; boost the healthy coping mechanisms that children do have.
• Be aware of anniversary dates and the grief behaviors that accompany the dates.
• Keep in contact with family members who can provide information about the child's functioning at home, as well as that of other
family members.
• Know your limits; you may be prepared to deal with normal grief reactions but be aware of red flags that indicate complicated
grief and make the appropriate referrals.
• Practice self-care. You can't appropriately care for anyone else if you don't take care of yourself
Nursing care:
• Nurses interact with bereaved children in a variety of settings. They can be supportive by providing information about grief
reactions and anticipatory grief. They can prepare family members for feelings of anger, isolation, and anxiety, and they can help
individuals develop healthy coping mechanisms.
• Hospice nurses have an opportunity to care for a dying parent and the family as much as six months prior to the death and for
months following the death. Hospice nurses often provide continuity of care and work to meet the children's grief and
bereavement needs.
• Like hospice nurses, home health nurses work in the home environment and have opportunities to provide care, counseling, and
referrals for bereaved children.
• Oncology nurses should consider the needs of the children of their dying patients, whether they work in inpatient or outpatient
settings.
• Nurses in outpatient settings can provide suggestions to adults for care of the children, even though they might never meet the
children of the patient. These nurses have opportunities for follow-up with the adults.
• Nurses in inpatient settings may see their patient's children during visits and can provide direct education and counseling to the
children.
• School nurses have access to bereaved children and have the opportunity to focus on children without interruption from
competing needs of other family members. School nurses and other school personnel can provide informal services as well
• Regardless of the practice setting, nurses can access a variety of bereavement resources to assist with the children's grief process
Category 4: Art
• It is evident from the literature that art can have a valuable role in cancer and palliative care. It has been used with success in
helping children and adults to express conscious and unconscious feelings. The emphasis must not be on artistic skill, but rather on
the process itself.
• Patients should be encouraged to explain their drawings if they wish. Assumptions regarding the work must not be made.
However, analysis by a qualified therapist IS invaluable where patients are unable to articulate what they are experiencing, or
where it is felt there are hidden issues
• Individual or group artwork may be used depending on the specific needs of individuals. The environment must be supportive and
those engaged in conducting the art session non-directive. This is crucial in order that the patients or clients can express their true
feelings freely.
• Not only may insight be gained in relation to thoughts and feelings, but also there is the potential for the development of the
creative domain, with the possibility of enhancement of self-esteem at a time when morale is often at a low point
• Assess patients' spiritual needs, interests, and tastes. Learn what has brought comfort and joy in the past and what they have had
fun doing. Suggest resuming these activities
• Provide space to display patient and family artwork in the clinical setting
• Develop a library of literature, poetry, quotations, art prints, photography, music tapes, and videos to support patients as well as
families and staff.
• Discover the patient's favorite color and/or flower. Bring in flowers as appropriate
• Keep plants and fresh flowers around the patient's bedside, when appropriate
• Assess the patient's environment noting what is in it as well as what is not. For example, note if the bulletin board is bare or filled
with family pictures. Some patients are comforted by meaningful or symbolic objects, (ie, a “shrine). Create space for this.
• Establish a collection of art materials, including blank books for writing that can be available to patients and staff at all times
• Discover the patient's favorite song or piece of music. Sing or play it for them, or find musicians who can. When possible, use live
music, for there is always a special rapport that evolves between the performer and the listener that engenders a new creation that
cannot be duplicated by recorded music.
Nursing Care Strategies for Care of Family Members: (Study no. 11)
• Encourage ill child to attend school (at hospital or regular school) as clinically possible. Even attending for a short time or sporadic
attendance may facilitate social networking and increase sense of continuing the ‘‘work of childhood.’’
• Encourage parent to consider taking sick leave or family leave from work, if possible.
• Reassure families in their decisions (e.g., whatever decision is made, it is the right one for them).
Provide opportunities for siblings to express their thoughts and concerns and encourage them.
• Help inform healthy sibling of the ill child's status and changing goals of care.
• Offer suggestions to involve healthy sibling in care of ill child (eg, make a special gift, read a story, help make a meal, help pick out
clothes).
• Recognize the risk factors associated with complicated grief (CG) to ensure that family caregivers receive prompt interventions.
• Support family caregivers experiencing CG by offering condolences for their loss, providing referrals to grief counseling or
supportive services, and allowing family caregivers to express their feelings about the loss.
• Provide efficient palliative care, symptom management, and patient and family education during the cancer trajectory to help
prevent experiences of CG in family caregivers.
Spiritual care for parents whose children with cancer face the End of Life: (Study no. 21)
Providing support:
• Relationships provided comfort (the supportive presence of staff, friends, and family members)
• Spiritual care provided by nurses. Friends and family provided comfort and support.
Enhance coping:
• The most important source of strength for parents who are caring for a dying child; strength was specifically found through God,
hope, faith, and prayer. Parents also stressed the importance of maintaining a positive attitude and finding meaning in the death of
the child
• Faith was central to parents' ability to cope and make meaning of child's death; faith sustained and comforted parents.
• Most frequently employed coping mechanism: Increasing spiritual practices and searching for meaning
Instilling hope:
• Religious beliefs allowed parents to maintain a bond with child after death. Building the child's legacy important to parents
• Keeping the memory of the child alive was a key factor for parents to successfully move forward in life
• Parents identified spiritual resources that helped them get through their child's death, including belief in the transcendent nature
of the relationship with the child
8. Cultural care
Guidelines for patient/family assessment with culturally diverse populations coping with end of life care:
• Assess the language used to discuss this patient's illness and disease, including the degree of openness in discussing the diagnosis,
prognosis and death itself
• Determine whether decisions are made by the patient or a larger social unit, such as the family
• Consider the relevance of religion beliefs, particularly about the meaning of death, the existence of an afterlife, and belief in
miracles
• Determine who controls access to the body and how the body should be approached after death
• Assess how hope for a recovery is negotiated within the family and with health care professionals
• Assess the patient's degree of fatalism versus an active desire for the control of events into the future
• Consider issues of generation or age, gender, and power relationships, both within the patient's family and in interactions with the
health care team
• Take into account the political and historical context, particularly poverty, refugee status, past discrimination, and lack of access to
care
• To aid the complex effort of interpreting the relevance of cultural dimensions of a particular case, make use of available resources,
including community or religious leaders, family members, and language translator
Understanding grief and bereavement among children of parents who are dying from dying: (Study no. 10)
• Children of different developmental levels have varying abilities to understand concepts involving cancer and death. Yet, children
are of all ages react to the separation of a parent and benefit from having cancer and death described to them in clear, concrete
language. Regardless of age, some children will want more information than others.
Nursing care and understandings of bereavement among children, when a parent dies of cancer: (Study no. 6)
• 0–3 months: The infant grieves for loss of nurturance and can be soothed by a substitute caretaker
• 4 months to 2 years: The child grieves the loss of a specific person and will search for that person, eventually giving up the search.
He or she may feel despair and lose interest in previously enjoyable activities.
• 2½– 5 years: The child's grief expressions are intermittent, but grief feelings are persistent. The child's behavior may regress,
becoming clingy and dependent and repeatedly asking for the deceased person. Feelings of anger may be directed toward the
living parent. The child may think obsessively about the deceased parent
• 5–8 years: The child uses denial to deal with loss, appearing as if nothing is wrong. The child may fantasize about the deceased,
feel guilt, and fear for the health and well-being of other family members. The child may appear self-reliant.
• 8–12 years: The child may fear sharing feelings of grief for fear of appearing childish. Angry feelings may manifest as irritability
and may be punished or ignored by caretakers. He or she may have difficulty accepting the finality of death. The child may act
grown up in an attempt to identify with the deceased parent, denying his or her helplessness. The child may become a caretaker or
control the behavior of others
• Adolescence: The child is expected to act adult-like but may feel childish, frightened, powerless, and dependent. Anger may be
expressed; anger may feed depression and punishment of self and others. The child may be resistant to communicating with
adults and concerned about acceptance of his or her grief behaviors. Guilt may lead to complications, including withdrawal,
depression, and acting out
• NORMAL OR VARIANT BEHAVIOR: Shock or numbness; Crying; Sadness; Anger; Feeling guilty; Transient unhappiness; Keeping
concerns inside; Increased clinging; Disobedience; Lack of interest in school; Transient sleep disturbance; Physical complaints;
Decreased appetite; Temporary regression; Being good or bad; Believing deceased is still alive; Adolescent relating better to friend
than family; Behavior lasts days to weeks
• SIGN OF PROBLEM OR DISORDER: Long-term denial and avoidance of feelings; Repeated crying spells; Disabling depression and
suicidal ideation; Persistent anger; Believing guilty; Persistent unhappiness; Social withdrawal; Separation anxiety; Oppositional
or conduct disorder; Decline in school performance; Persistent sleep problems; Physical symptoms of deceased; Eating disorder;
Disabling or persistent regression; Being much too good or bad; Persistent belief that deceased is still alive; Promiscuity or
delinquent behavior; Behavior lasts weeks to months
• The model identified four stages of grief according to 1) a time frame: 2) numbness, 3) yearning and protest, 4) disorganization,
and reorganization
• Anticipatory grief is an emotional response that is experienced before a true loss. Other terms for this prescient state include
preparatory grief or premature grief.
• Anticipatory grief is a symptom that can be experienced by caregivers and patients, especially those coping with advanced disease.
Frequently, symptoms of anticipatory grief are disguised as depression, anxiety, or pain.
• Manifestations of CG include (a) intense longing; (b) loneliness, emptiness, or lack of meaning in life; (c) recurring thoughts of
wanting to join the deceased; and (d) intrusive thoughts about the deceased that interfere with functioning.
• Individual signs and symptoms of CG also may include feelings of guilt over the death; constantly replaying the circumstances of
the death in their mind; imagining that they could have somehow prevented the death if they had done something differently; and
feeling numb, shocked, or in disbelief over the death. The nature of the relationship to the deceased, personality traits, coping
style, psychiatric history and comorbidities, and socioeconomic factors all contribute to the risk of CG.
2. Dedicating ressources: a) Family being there for the patient b) Accommodating care
Death occurs
7. Becoming engulfed with suffering a) Missing, longing, yearning: Enduring hopelessness, existing in the present, reliving the past.
B) Making sense: Aching with physical pain, Getting through the day
• The Dual Process Model (DPM) of coping with bereavement describes everyday life experiences of adaptive coping as a back and
forth oscillation between both loss (including grief work, denial, and intrusion of painful emotions) and restoration processes
(including doing new things, distraction and seeking new identities). The essence of adaptive grieving is found in accommodating
the loss while also engaging in activities to promote restoration
• In this article, we use the term ―double bereavement to refer to the double loss and grief experienced as a consequence of
parental divorce in combination with the subsequent death of the parent or development of a parent's critical illness where death
is imminent or expected.
4. Discussion
In relation to understandings of bereavement and coping with bereavement the dual process model by Stroebe and
Schut was used, showing the importance of nursing interventions targeted both the loss and restitution of bereaved
families (Holtslander et al., 2016; Marcussen et al., 2019; Stroebe and Schut, 2010). Also Hogan's bereavement model
was represented targeted understandings of bereavement in nursing care, showing that social support impacts the
personal growth of a bereaved person (Walsh and Schmidt, 2003). Altogether the studies present knowledge and
interventions, which can support nurses, when caring for bereaved individuals and families during grief and
bereavement; when caring for parents who have lost a child, and children who experience grief and bereavement. In
future research we suggest that further research are conducted on the understanding of complicated grief (Mason et
al., 2020; Shear, 2015), and prolonged grief (World Health Organisation, 2018) - and interventions in relation to these
specific types of grief in the context of cancer nursing. To sum up the findings of multiple understandings of grief and
bereavement existing in nursing care present that nursing care targeted people's loss experiences can be a demanding
task for nurses, and therefor highlight a need of knowledge and competences development in both nursing practice
and nurse education.
Other theoretical perspectives may also contribute with inspiration, when using theoretical understandings for
inspiration to identify problems in regards of grief and bereavement among patients and families. For instance, the
Swedish psychiatrist Loma Feigenberg developed a theory, which is often used in the context of nursing as it inspires
nurses to take a broad perspective to identify loss during terminal illness (Feigenberg, 1976). According to Feigenberg
loss during terminal illness is related to five central areas in human life: 1) Loss of Body 2) Loss of Self-control 3) Loss
of Identity 4) Loss of Social relations and 5) Loss of Life content (Feigenberg, 1976). This theoretical perspective could
be further supplemented with Max Van Manen's theory about the four existentials in human life: The body; Social
relations; Time; Room (van Manen, 1997). However, two of these existentials are already present in Feigenberg's theory
(the body and social relations), but the perception of time and room can inspire nurses to take an even broader
approach to identify grief and bereavement among patients and families in the context of cancer nursing. According to
Van Manen the perception of time often change during illness - for instance life becomes abrupt and shorter than
expected, waiting time may also occur. Futhermore, Rooms may change – e.g. losing the ability to stay at home, having
problems feeling at home during hospitalization. But, Room also represents the inner room/mental health - e.g.
existential struggles and thoughts related to one's life situation.
Present scoping review has a mono-disciplinary perspective. The review contributes with an overview and mapping of
existing knowledge targeted cancer nursing in relation to grief and bereavement, and understandings of grief and
bereavement in cancer nursing. However, palliative care is also a multidisciplinary discipline and involves various
professions. Some of the excluded studies in present scoping review covers the multidisciplinary and other mono-
disciplinary professions which nursing care could seek inspiration from in order to improve the quality of cancer
nursing care. These studies are e.g. targeted: Bereavement programs (Morris and Block, 2015); bereavement groups
(Näppä et al., 2016) and music therapy (Hilliard, 2003; Magill, 2009).
To further explore and identify even more existing knowledge on interventions and understandings of grief and
bereavement relevant for nursing care the context could be expanded also to include multidisciplinary studies and
other mono-disciplinary professions in palliative cancer care. Also it can be expanded to include patients and families
perspectives about nursing care targeted their grief and bereavement experiences (Kim et al., 2013). In 2018 the new
diagnosis prolonged grief disorder were presented by WHO (World Health Organisation, 2018). There was a lack in this
study identifying knowledge about prolonged grief. Meanwhile there will be a need in the future to investigate, how
nurses should both prevent this in patients and family's life and how to target support towards people with this
diagnosis.
5. Conclusion
Present scoping review aimed to explore existing knowledge on nursing care and nurses' understandings of grief and
bereavement targeted patients and their families throughout the course of cancer illness. Twenty-two studies were
included in this scoping review published in the period of 1995–2021. The mapping of findings revealed eight
categories targeted interventions to support patients and families during grief and bereavement. These covers a broad
spectrum of interventions in relation to e.g. communication, using artwork, including cultural and spiritual care,
bereavement care after the loss of a loved one and supporting coping strategies. Also the mapping included studies
presenting models for identifying needs and interventions to support families during grief and bereavement. Moreover,
a 9th category was identified related to understandings of grief and/or bereavement in nursing care. This covers e.g. the
dual process model of bereavement, the Hogan's model of bereavement, anticipatory grief, double bereavement and
understanding the grief and bereavement proces among children. These categories can be used as inspiration, when
developing nursing care for patients and families targeted grief and bereavement. Furthermore present scoping review
map the population groups within the included studies: 1) Children/parents, 2) Patients and 3) Family. This revealed a
gap of knowledge in regards of studies focusing on nursing care targeted grief and understandings of grief among
patients. In addition, gaps of knowledge were identified related to the nine developed categories. Further, gaps where
identified in the discussion, when reflecting on non-existing categories in nursing care, e.g. using music when caring
for patients of families experiencing grief or bereavement.
None to declare.
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