Disability and Rehabilitation

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The social trajectory of brain tumor: a qualitative

metasynthesis

Lee Cubis, Tamara Ownsworth, Mark B. Pinkham & Suzanne Chambers

To cite this article: Lee Cubis, Tamara Ownsworth, Mark B. Pinkham & Suzanne Chambers
(2017): The social trajectory of brain tumor: a qualitative metasynthesis, Disability and
Rehabilitation, DOI: 10.1080/09638288.2017.1315183

To link to this article: http://dx.doi.org/10.1080/09638288.2017.1315183

Published online: 19 Apr 2017.

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DISABILITY AND REHABILITATION, 2017
http://dx.doi.org/10.1080/09638288.2017.1315183

REVIEW ARTICLE

The social trajectory of brain tumor: a qualitative metasynthesis

Lee Cubisa , Tamara Ownswortha , Mark B. Pinkhamb and Suzanne Chambersc,d
a
School of Applied Psychology, Menzies Health Institute Queensland, Griffith University, Mt Gravatt, Australia; bPrincess Alexandra Hospital,
University of Queensland, Woolloongabba, Australia; cMenzies Health Institute, Queensland, Nathan, Australia; dCancer Council Queensland,
Brisbane, Australia

ABSTRACT ARTICLE HISTORY

Purpose: Research indicates that strong social ties can buffer the adverse effects of chronic illness on psy- Received 7 December 2016
chological well-being. Brain tumor typically leads to serious functional impairments that affect relation- Revised 28 March 2017
ships and reduce social participation. This metasynthesis aimed to identify, appraise and integrate the Accepted 30 March 2017
findings of qualitative studies that reveal the impact of brain tumor on social networks.
Methods: Four major databases (PubMed, CINAHL, Cochrane Library and PsycINFO) were systematically KEYWORDS
searched from inception to September 2016 for qualitative studies that reported findings on the impact Brain tumor; social identity;
of primary brain tumor on social networks during adulthood. Twenty-one eligible studies were identified social support; adjustment;
and appraised according to the Consolidated Criteria for Reporting Qualitative Research. Key findings of qualitative; metasynthesis
these studies were integrated to form superordinate themes.
Results: The metasynthesis revealed the core themes of: 1) Life disrupted; 2) Navigating the new reality
of life; and 3) Social survivorship versus separation.
Conclusions: Multiple changes typically occur across the social trajectory of brain tumor, including a loss
of pre-illness networks and the emergence of new ones. Understanding the barriers and facilitators for
maintaining social connection may guide interventions for strengthening social networks and enhancing
well-being in the context of brain tumor.

ä IMPLICATIONS FOR REHABILITATION

Social networks and roles are disrupted throughout the entire trajectory of living with brain tumor

Physical, cognitive and psychological factors represent barriers to social integration

Barriers to social integration may be addressed by supportive care interventions

Compensatory strategies, adjusting goals and expectations, educating friends and family and accept-
ing support from others facilitate social reintegration throughout the trajectory of living with brain
tumor

Introduction treatment (e.g., seizures, fatigue, memory deficits and communica-

According to global estimates, primary brain tumor is relatively
rare (7.1/100,000 for malignant tumors and 13.8/100,000 for
benign tumors) [1]; however, the symptom burden and mortality
rate is high. People with brain tumor develop diverse physical,
cognitive and behavioral impairments and typically have a poor
prognosis for survival [2]. In particular, median length of survival
is approximately 7, 4 and 1.5 years for World Health Organization
(WHO) grade II, grade III and grade IV gliomas respectively [3,4].
They also face considerable uncertainty regarding their treatment
outcome and anxiety regarding tumor recurrence, progression
and functional decline. Not surprisingly, high rates of depression
and anxiety (e.g., 41–48%) have been reported in both early and
late phases of the illness [5,6]. Although there is preliminary sup-
port that psychological interventions can alleviate symptoms of
anxiety, depression and existential distress associated with brain
tumor [7], such support is typically time limited and often focuses
on the individual rather than their social network.
People with brain tumor report the second highest level of
symptom burden (after people with lung cancer) compared with
other major cancer types [8]. The effects of brain tumor and
tion difficulties) can compromise an individual’s ability to maintain
relationships, perform social roles, and stay engaged in valued
social groups [9]. As the disease recurs or progresses people often
experience decreased participation in meaningful activities [10].
Losses such as employment termination and relationship break-
down can impact social status and have negative implications for
health and well-being.
Social Identity Theory (SIT) [11] perspectives highlight that peo-
ple derive their sense of identity from membership of social
groups (e.g., family, work, sporting). Such groups can provide a
sense of belonging, support and identity continuity during stress-
ful life transitions such as illness [12,13]. In line with SIT, social
neuroscience research highlights the positive physiological and
psychological effects of social group memberships [13,14] and the
negative effects of social threat and exclusion [15]. Remaining
connected to valued social groups has been found to buffer the
effects of stress and chronic illness on well-being [16,17].
Conversely, loneliness and social isolation place people at
increased risk of poor psychological and physical health. For
example, people with few social ties prior to stroke were at

CONTACT Lee Cubis lee.cubis@griffithuni.edu.au School of Applied Psychology, Griffith University, Mount Gravatt QLD 4122, Australia
ß 2017 Informa UK Limited, trading as Taylor & Francis Group
2 L. CUBIS ET AL.
significantly greater risk of post-stroke health complications, par-
tially through higher levels of stress and depression, than those
with strong social ties [18]. Further, Haslam et al. [19] found that
belonging to multiple social groups prior to stroke was associated
with greater post-stroke life satisfaction, and that stronger preex-
isting social networks increased the likelihood of people maintain-
ing their social connections after stroke. People with stroke and
brain tumor often have similar functional impairments arising
from neurological damage. Hence, the findings from the stroke lit-
erature may be applicable to people with brain tumor. However,
people with brain tumor face unique challenges associated with
the effects of cancer, including treatments such as radiotherapy
and chemotherapy that may further impact upon social
integration.
In the context of brain tumor, there is preliminary evidence
from quantitative research that higher satisfaction with social sup-
port is associated with better quality of life and emotional adjust-
ment [10]. However, due to the complex physical, cognitive and
behavioral effects of brain tumor, people can find it difficult to
maintain existing social groups and establish new ones [9]. There
is a need to better understand the barriers and facilitators to
social interaction and participation following diagnosis of brain
tumor. Qualitative studies can provide an in-depth understanding
of the lived experience of individuals in the context of their
adjustment to an illness. No previous review has focused on the
lived experiences of individuals with brain tumor from a system-
atic point of view. Accordingly, a metasynthesis was conducted
which aimed to systematically identify, appraise and integrate the
findings of qualitative studies that reveal the impact of brain
tumor on social networks from the perspectives of individuals
with brain tumor.
Methods
A qualitative metasynthesis was employed to gain an in-depth
insight into the social impact of primary brain tumor from the
perspective of those living with the illness. Metasynthesis integra-
tes data across diverse samples and contexts allowing interrelated
themes to be compared, merged and developed into superordin-
ate themes [20]. Such methodology can generate new theoretical
or conceptual frameworks, identify gaps in research and practice
and influence the development of primary studies [21]. Previous
metasyntheses have explored the experience of living with
chronic illness such as stroke [22], traumatic brain injury [23],
multiple sclerosis [24] diabetes [25] and cancer [26].
Design
Guided by Sandelowski and Barroso [27], the present metasynthe-
sis entailed the following stages: (1) framing the focus of the
review; (2) undertaking a comprehensive literature search; (3)
appraising the quality of included studies; (4) tabulating key
themes, categories and quotations; and (5) synthesizing the
findings.
Search strategy
A search of four databases including Pubmed, PsychINFO, CINAHL
and Cochrane Database of Systematic Reviews was conducted.
Reference lists of included studies were also checked to identify
further relevant articles. An individual search strategy was devised
for each database using the following sets of keywords:
1. Brain tumoOR brain cancer OR glio OR intracranial tumo
OR intracranial neoplasm;
2. Social OR group OR friend OR couple OR family OR families
OR caregiver OR next of kin OR member OR work OR
employment OR activit OR leisure OR support; and
3. Qualitative OR grounded theory OR hermeneutic OR the-
matic OR theme OR phenomenolog OR lived experience.
Inclusion criteria
The title and abstract of each article were screened by the first
author (LC) to compile a list of potential studies for inclusion. The
full-texts of an initial set of potentially relevant articles were then
retrieved for independent review by two authors (LC and TO)
according to predetermined inclusion criteria. To be included in
the review, peer reviewed articles published in English were
required to report original qualitative data relating to the impact
of primary brain tumor on social networks for adults (18 years
with no upper age limit). Data needed to be collected via custom-
ary qualitative approaches (e.g., interview, focus group, open-
ended survey questions) with sufficient data (i.e., participant quo-
tations) reported to support the study findings.
Studies employing both qualitative and quantitative methods
were eligible if qualitative data could be extracted for analysis.
Further, studies that also reported on the experiences of signifi-
cant others (e.g., caregivers, health professionals) were eligible if
data specific to the participants with brain tumor could be distin-
guished from these perspectives. Similarly, qualitative studies on
people with different types of cancer were eligible if data specific
to the experiences of participants with brain tumor could be
extracted. Studies were excluded if there was a sole focus on peo-
ple with cancers other than primary brain tumor (e.g., brain meta-
stases). Additionally, qualitative studies that focused primarily on
participants’ experience of hospitalization or interactions with
health professionals in an acute setting were excluded. However,
studies in which participants referred to health professionals as
providing ongoing social support were considered relevant to the
aims of the present metasynthesis.
Critical appraisal
The consolidated criteria for reporting qualitative research
(COREQ) were used to assess the quality of reporting for the
included studies [28]. One author (LC) conducted the critical
appraisal with each rating reviewed by the second author. The
COREQ contains 32 items that are grouped into eight subhead-
ings, falling within three domains: (1) research team and reflex-
ivity; (2) study design; and (3) analysis and findings. Studies
were appraised as fulfilling, partially fulfilling or inadequately
fulfilling criteria under eight subheadings across the three
domains.
Search outcomes
A flow diagram outlining the selection of studies for the metasyn-
thesis is provided in Figure 1. As shown, the search of electronic
databases identified 647 potentially relevant articles. Reference
lists identified a further nine potential studies. After excluding
duplicates and screening titles and abstracts, 39 articles were
identified as potentially eligible. Two authors (LC and TO)
reviewed the full texts of the 39 articles. Level of agreement for
inclusion was high (95%), with disagreement on two articles dis-
cussed and resolved. Overall, 21 articles met the inclusion criteria.
Table 1 summarizes the methodology and key findings of these
studies.

Step 1: Idenficaon
Electronic databases searched using key
terms (n = 647)
Step 2: Screening
Abstracts reviewed and retained arcles
where content suggested potenal
eligibility (n = 284)
Step 3: Eligibility
Full-text arcles reviewed independently
by two authors for possible inclusion
(n = 39)
Step 4: Inclusion
Final studies included in meta-synthesis
(n = 21)
Figure 1. Flow diagram of literature search and study selection.
Data extraction and synthesis
Data extraction and synthesis was completed in five phases: (1)
general characteristics of each study were described (see Table 1);
(2) two members of the research team (LC and TO) read and dis-
cussed the studies, collaboratively summarizing the findings based
on author interpretation and participant quotations; (3) findings
were compared across studies to identify similarities and differen-
ces; (4) interrelated themes were summarized in a table; (5) the
table of themes informed a narrative account of the findings of
the metasynthesis.
Results
Quality of reporting
Quality of reporting was assessed using the COREQ checklist [28]
and as shown in Table 2, no papers fulfilled all the criteria.
Research team and reflexivity was the least fulfilled domain, with
none of the studies adequately describing the researchers’
THE SOCIAL TRAJECTORY OF BRAIN TUMOUR 3
Addional arcles idenfied
through reference lists of studies
(n = 9)
Excluded based on tle (n = 372)
- Duplicate (n = 343)
- Not published in English (n = 29)
Excluded based on abstract (n = 245)
- Adults with primary brain tumour were
not studied
- Treatment or intervenon studies
- Review arcles
- Quantave methodology used
Excluded based on full-text (n = 18)
- No socially related data (n = 10)
- Lack of sufficient qualitave data
reported (n = 5)
- Mixed samples with blended data (n = 3)
relationship with participants, and only six of the 21 studies
adequately reporting the personal characteristics of the research
team. The domain of study design was partially fulfilled by all
studies. The analysis and findings domain was partially fulfilled by
all studies; however only three studies adequately described the
approach to data analysis.
Qualitative metasynthesis
Overall, very few studies specifically sought to investigate the
impact of brain tumor on social networks. Nonetheless, the meta-
synthesis of the 21 qualitative studies yielded three core themes
depicting the social impact of brain tumor. To some extent, these
themes paralleled the trajectory of the illness. The first theme, life
disrupted, represented early changes in relationships and social
participation that occurred during the acute diagnosis and initial
treatment period, as well as later in the illness as tumor regrowth
and/or progression occurred. The second theme, navigating the
new reality of life, reflected changes in social networks that
4 L. CUBIS ET AL.

Table 1. A summary of qualitative studies reporting pertinent themes relating to the social impact of brain tumor.
Participants and
Study Focus/aim of the study Context Sampling Methodology Main categories
[49] Experience of death n ¼ 20; high grade Purposive information- Phenomenology and her- (1) Emotional reactions; (2) Fear,
anxiety by people brain tumor (60% rich maximum-vari- meneutic approach; existential anxiety and existential
with brain tumor male, 30–72 years) ation sampling semi-structured pain; (3) Contradictions;
and their next of kin and 15 next of kin interviews (4) Trigger phenomena; (5)
recruited from a Strategies; (6) New values for life;
medical center in and (7) Special reactions charac-
Sweden teristics of spouses
[45] Psychosocial needs of n ¼ 40; GBM (70% Purposive Interpretive phenomen- (1) Myths and misconceptions
people with glio- male; mean age ology; semi-structured related to GBM; (2) Denial of
blastoma multiforme ¼49.57 years) interviews diagnosis; (3) Educational and
(GBM) in India recruited through informational, communication
the National Institute needs; (4) Financial difficulties; (5)
of Mental Health and Dependency on family members;
Neuro-Sciences, (6) Personal feelings; (7)
Bangalore, India Difficulties in adjusting with post
surgical conditions and worries
about treatments; (8) Concerns
related to family and role
changes; (9) Stigma and lack of
social participation; and (10)
Uncertainty related to recurrence
and death.
[41] Beliefs and decisions n ¼ 15; Latino men Purposive Thematic analysis; semi- (1) A cancer diagnosis is synonym-
about cancer treat- with cancer were structured interviews ous with death; (2) Diagnostic-
ment for foreign recruited from com- related communication; (3)
born Latino men liv- munity health clinics, Reliance on physicians for treat-
ing the USA churches, cultural ment decisions; (4) Limited infor-
centers and support mation and informal advanced
groups care planning; and (5) Support
received and role changes.
[34] Experiences of people n ¼ 26; people with Purposive Grounded theory. In depth (1) Dynamic physical trajectory; (2)
with cerebral glioma brain tumor (WHO qualitative interviews Dynamic social trajectory; (3)
throughout the grades II-IV; 54% Dynamic psychological trajectory;
course of the illness. male; 21–76 years), and (4) Dynamic existential
23 relatives and 19 trajectory
general practitioners
recruited through a
UK regional neuro-
surgical center
[40] Early post-discharge n ¼ 9; nonmalignant Stratified purposeful Thematic content analysis; “Establishing a new reality” under-
supportive and care brain tumor (67% and convenience semi-structured pinned by three primary catego-
requirements of peo- female; 36–70 years) sampling interviews ries:
ple with nonmalig- and 5 spouses (1) Coping with available sup-
nant brain tumor recruited from a hos- ports;
and their family pital neurosurgical (2) Adjusting to routines and
caregivers ward and brain relationships; and (3) Emotional
tumor clinic in responses
Australia
[42] Perceived illness related n ¼39; predominantly Purposive Manifest and latent con- Problems emerged on physical, psy-
problems and coping low-grade glioma tent analysis; semi-struc- chological, communication and
for people with low (69% male; 21–79 tured interviews social and environmental
grade glioma years) recruited domains. Frequent coping strat-
through the Regional egies included: searching for a
Cancer Register in solution; refraining from and
€
Orebro, Sweden avoiding; laughing and joking;
caring about self; and seeking
social affinity
[29] Adult experience of n ¼ 27; low-grade glioma Purposive Manifest and latent con- (1) Rapid and prolonged illness
becoming ill with a (67% male; 23–79 tent analysis; semi-struc- onset; (2) Negative and positive
low-grade glioma years). Recruited tured interviews healthcare situations; and (3)
through the Regional Negative and positive life-situ-
Cancer Register in ation consequences
€
Orebro, Sweden
[44] Peoples’ experiences of n ¼ 19; high-grade gli- Consecutive sampling Grounded theory; semi- (1) Feelings of uncertainty; (2) The
living with high oma (63% male; initially, then structured interviews need for information; (3)
grade glioma; infor- 31–74 years) purposive Dependence on their carer; and
mation and support recruited through a (4) Communication with health
needs medical oncology professionals
department in
Western Australia
(continued)

Table 1. Continued
Participants and
Study Focus/aim of the study Context
[31] Supportive care needs n ¼ 18; people with Letters sent out.
of people with brain brain tumor WHO
tumor and their Grade I-IV (61%
relatives female; 27–79 years)
and 18 caregivers
recruited from a
brain tumor support
service in Australia
[43] Role of quality of life n ¼ 4; low-grade cere- Unclear
(QOL) in treatments bral astrocytoma
and therapies for (100% male; 25–41
brain tumor years) recruited from
a department of
neurosurgery in
Finland
[30] The survivor experience n ¼ 35; high-grade gli- Purposive
of people living with oma (63%
malignant brain male;30–65 years)
tumor for three years and 35 caregivers
or longer recruited from mul-
tiple neuro-oncology
clinics in the Unites
States
[32] Personal and social n ¼ 18; primary brain Purposive
processes of adjust- tumor WHO Grade
ment at different I–IV (56% male;
stages of illness for 28–67 years) and 15
people with brain caregivers recruited
tumor from a brain tumor
support service and
a neurosurgical prac-
tice in Australia
[35] Experiences and needs n ¼ 30; high grade gli- Criterion
for rehabilitative and oma (63% male;
supportive care for 29–82 years) and 33
people with high- caregivers recruited
grade glioma and from a neurosurgery
their caregivers department in
Copenhagen
[36] Lives of people with n ¼ 28; high-grade gli- Consecutive
glioma from diagno- oma (71% male;
sis throughout the 32–70 years) and
entire course of the their next-of-kin
illness. To combine recruited from a clin-
quantitative data ical trial evaluating a
with case descrip- cytostatic treatment
tions to present a (estramustine phos-
conceivable method phate) in addition to
for generating clinic- radiotherapy
ally relevant know-
ledge and apply this
method to people
with high-grade
glioma.
[48] How people with brain n ¼ 25; high-grade gli- Consecutive
tumor and their oma (64% male;
spouses talk about 32–70 years) and 24
death and dying spouses recruited
from a regional hos-
pital in Sweden
THE SOCIAL TRAJECTORY OF BRAIN TUMOUR
Sampling Methodology
Framework Method; focus
Sampling continued groups and semi-struc-
until a heterogenic tured interviews
composition was
achieved.
Content analysis; semi-
structured interviews
Thematic description; semi-
structured interviews
Phenomenology; semi-
structured interviews
Thematic analysis; semi-
structured telephone
interviews
Grounded theory; semi-
structured interviews
Grounded theory; semi-
structured interviews
5
Main categories
(1) Need for support, but unable to
name exactly what kind of sup-
port; (2) Need for information
and coping with uncertainty; (3)
Need for practical support; (4)
Need for support to return to
pretreatment responsibilities or
prepare for long term care; (5)
Need for support to deal with
social isolation and organize res-
pite care; (6) Need for support to
overcome stigma/discrimination;
and (7) Need for support to dis-
cuss potentially reduced life
expectancy
(1) The effect of fears on QOL; (2)
Occupational findings; (3) Effect
of symptoms on QOL; (4) Leisure
time activities; (5) Significant
others; (6) Moods; and (7)
Worthiness of life
(1) Stability disintegrates; and
(2) A new reality
Primary theme: Key sense making
appraisals. Secondary themes:
(1) Interactions with the health-
care system; (2) Reactions and
support from the personal sup-
port network; (3) A diversity of
coping efforts.
(1) Individual strategy for acquiring
prognostic information; (2)
Shared hope; (3) Engagement in
health promotion activities; and
(4) Adjustment to symptom
limitations
Time after treatment was judged as
representing ‘time of everyday
life’ or ‘time of disease’
(1) The person with brain tumor
does not seem to be aware, the
spouse is aware but pretends not
to be; (2) Both are aware, but
the person with brain tumor
does not want to share and they
drift apart; (3) Both are aware,
they do/do not openly talk about
the gravity of the situation;
nevertheless, there is a joint
(continued)
6 L. CUBIS ET AL.

Table 1. Continued
Participants and
Study Focus/aim of the study Context Sampling Methodology Main categories
platform; and (4) Neither person
with brain tumor nor spouse
seems to be aware; they carry on
living as before
[47] The impact of seizures n ¼ 27; primary brain Attempted consecutive Qualitative analysis; semi- (1) The first seizure as a sentinel
on quality of life for tumor WHO grade recruitment, except structured interviews event; (2) Seizures as inextricably
people with primary II–IV (56% female; where a primary tied to the brain tumor itself; and
brain tumor. 31–73 years) health provider indi- (3) adaption and acceptance – or
recruited from oncol- cated that a referral lack thereof – to seizures
ogy and neurology was not appropriate
departments in
Minnesota, United
States.
[33] How people with high- n ¼ 17; high-grade gli- Originally purposive Grounded theory; semi- Experiences of patients
grade glioma experi- oma (59% male; sampling, super- structured interviews (1) Devastating experience of living
ence life with brain 28–73 years) seded by theoretical with HGG; (2) Uncertainty and
tumor; professional recruited from a hos- sampling anxiety; (3) Feeling of loss; (4)
care needs pital oncology ward Disregard; (5) On the sidelines of
in Belgium their own life; and (6) Patients’
inner strength that keeps them
going
Caring needs
(1) As support but also as a burden;
(2) The need for information; (3)
Feel that they can share; and (4)
Accessibility and availability.
[37] How people with brain n ¼ 20; primary brain Purposive information Hermeneutic; semi-struc- (1) Comprehensibility, the cognitive
tumor and their next tumor WHO Grade II- rich maximum-vari- tured interviews component; (2) Manageability,
of kin are able to IV and sixteen next- ation sampling the behavioral component; and
cope, understand of-kin in Sweden (3) Meaningfulness, the motiv-
and create meaning were recruited by ational component
in their situation, mail and telephone
whether spirituality follow-up.
could be supportive,
and to understand
whether these con-
cepts fit with a
Sense of Coherence
model.
[46] How people who have n ¼ 7; meningioma; Purposive Phenomenological hermen- (1) In between double threats: the
undergone surgery (100% female; 37–59 eutic; narrative inter- tumor and operation; (2) The
for meningioma years) recruited views wound as an open gate; (3) The
experience their through a rehabilita- suffering body overflows life; and
“body and life- tion hospital in (4) The need to be embraced by
world”; the meaning Sweden attention.
of the brain tumor,
operation and
recovery
[38] The experience of living n ¼ 3; high-grade gli- Consecutive Content analysis; conversa- (1) Onset of illness and learning the
with a highly malig- oma (67% male; tional qualitative diagnosis; (2) Daily life; (3) The
nant brain tumor 25–88 years) and 5 interviews encounter with staff and informa-
from a family next-of-kin recruited tion received.
perspective from a neurology
clinic in Sweden
[39] Supportive care and n ¼ 29; primary brain Convenience Grounded theory; semi- (1) Need for formal support from
resource needs of tumor WHO Grade I structured interviews diagnosis onwards;
people with benign (69% female; 20–88 (2) Complexity of supportive
brain tumor under- years) recruited from needs during postoperative
going craniotomy a neurosurgery div- recovery; (3) Importance of regu-
ision of a hospital in lar long-term monitoring by
Toronto, Canada. physicians; (4) Influence of psy-
chosocial factors on supportive
needs; and (5) Existence of bar-
riers to equal access to available
supports

occurred as the functional impairments and treatment effects
were better understood. The third theme, social survivorship vs.
separation, was characterized by ongoing barriers to social partici-
pation and stability in relationships as individuals adapted to the
illness in the longer term and/or faced end of life. Categories per-
tinent to individuals’ social experiences within these themes
emerged from the studies. Figure 2 provides a visual representa-
tion of these themes and categories. Although themes are pre-
sented temporally, this figure is not meant to imply discrete or
mutually exclusive stages of adjustment. Rather, a dynamic pro-
cess of adaptation was evident with individuals facing ongoing
and different stressors following the initial diagnosis (e.g., tumor
 THE SOCIAL TRAJECTORY OF BRAIN TUMOUR 7

Table 2. Critical appraisal of studies using the COREQ qualitative appraisal tool.
Domain 3: analysis and
Domain 1: research team and reflexivity Domain 2: study design findings
Personal Relationship with Theoretical Participant Data Data
Study characteristics participants framework selection Setting collection analysis Reporting
[49] X X  P  P P 
[45] P X  P P P P 
[41] P P  P  P P 
[34] X P  P  P P 
[40] P P    P  
[42] P P  P P  P 
[29]  X   P P P 
[44] X P    P P 
[31] P P    P P 
[43] X X   P P P 
[30] P P    P P P
[32] P P    P  
[35]  P    P  
[36]  P  P  P P 
[48]  P    P P P
[47]  X    P P P
[33] X X    P P 
[37] X X  P  P P P
[46]  P  P P P P 
[38] P P   P P P P
[39] X X  P  P P 
: criteria fulfilled; X: criteria not fulfilled; P: criteria partially fulfilled.

Life disrupted Navigang the new Social survivorship vs.

reality of life separaon
Onset, diagnosis, hospitalisaon& treatment
Pre-Exisng Social Roles & Support Network

• Focus on inpaent care, • Barriers to social • Disease progression and

treatment and recovery reengagement funconal decline
• Interacons with health • Ongoing barriers to
professionals social connecon
• Relaonship loss, •
• Heavily reliance on pre- Renewed meaning in
strain, maintenance or relaonships
exisng social networks
strengthening
• Early role and • Adapng to role
• Loss and change of changes
relaonship changes
social roles

• New social contacts • Maintained social

• Seeking social affinity connecon; giving and
• Reacons of others
• Gradual and selecve receiving support
social reengagement

• Concern for others • Leaving loved ones

behind

Figure 2: The social trajectory of living with brain tumour.

recurrence, changes in symptomatology and treatment) that This theme also depicted people’s experiences beyond the initial
required them to continually adjust or cope. diagnosis when they faced other stressors such as receiving the
news that the tumor had recurred or progressed to a higher
Life disrupted grade [32,34–36], which meant that their lives were in turmoil
Symptoms of brain tumor were typically experienced as sudden, once again “I think, probably, that it’s just normal and I am fine.
unexpected and uncontrollable [29,30]. Treatment usually com- But at the back of my mind, always the thought, now is this the
menced rapidly; hence peoples’ lives were substantially disrupted cycle starting again” [34, p. 378].
with little time to prepare for the changes brought about by their People with brain tumor were largely occupied by medical
diagnosis [31]. This theme depicted common experiences of the appointments, adjusting to physical and cognitive impairment,
acute phase following diagnosis and initiation of treatment, where and a focus on recovery; therefore interactions with health profes-
the majority of time was focused on inpatient care, treatment and sionals emerged as important for wellbeing. Health professionals
recovery. People were often experiencing strong emotional reac- were able to provide hope and reassurance, lessen anxiety and
tions to their diagnosis, managing heavy symptom burden and support coping efforts [34,37]. People appreciated a kind bedside
coming to terms with a poor or uncertain prognosis [32,33]. manner, the use of humor and efforts to build rapport with them
8 L. CUBIS ET AL.
and their families. One participant stated: “He was able to show
us a scan and went through everything. He had a great rapport
with my family. His bedside manner was fabulous, and he joked,
you could sort of have a laugh with him” [32, p. 128]. In contrast,
some health professionals were described as preoccupied with
technical aspects of care and delivered information with little con-
sideration of the emotional impact. A lack of effective communica-
tion or sensitivity was associated with increased distress after the
initial diagnosis as well as difficulty maintaining hope upon hear-
ing the news that the tumor had recurred [32–34,37]:
“Doctor … .has made us cry a couple of times … .just his manners
in delivering … . I’m sure he’s a brilliant man but his person skills
are lacking … .He’s sitting there and taking phone calls all the
time” [32, p. 128]
Timely access to health professionals was described as crucial
for support, however they were often perceived as too busy to
meet people’s informational and emotional needs [32,33]. Several
studies identified that information regarding the diagnosis, the
likely impact of the illness and future prognosis was insufficient
[31,33,34,38,39]. Referrals to allied health professionals including
psychologists and social workers were limited; rather, people with
brain tumor and their families needed to actively seek out these
services [32,40]. Participants in the study by Janda et al. [31] rec-
ommended having a designated staff member to assist in facilitat-
ing discussions, accessing medical and practical information and
coordinating support.
Changes in cognitive functioning, physical impairments and
emotional distress resulted in a heavy reliance on preexisting social
networks. Most people reported that these sources of support
were greatly valued [29,31–34,39,40–43] with existing social bonds
enabling them to communicate their needs, maintain hope and
cope with distress [34,42,43]. Informal social networks such as
close friends and family were able to provide practical support
such as cooking, housework and transportation [31,32,40,41] and
emotional support, such as listening to and talking over concerns
[29]. For example: “I have such a wonderful support group around
me that’s been no problem … .my family and I’ve got 2 particular
friends that ring me every couple of days. My daughter works and
rings me about 5 to 5 every afternoon to ask if I need anything”
[40, p. 2599].
Ownsworth et al. [32] reported that it was the offer of support
and knowing that this was available that mattered, regardless of
whether the support was accepted by the person with brain
tumor. Interestingly, although most people appreciated offers of
support, others reported an overabundance of support, evoking
feelings of dependence, frustration and a loss of autonomy [33,
38,44], as follows: “When I go, for example, to the hairdresser,
which is in the village, then I need to say, ‘I'm going there, there,
there’, and then she still checks on me and that really feels like
[she's] taking away my freedom” [33, p. 386].
The increased reliance on close family and friends during the
acute illness phase resulted in early role and relationship changes.
Upon people returning home from hospital, family members
assumed greater responsibilities such as providing transporta-
tion, parenting, meal preparation and physical care [29,35,40,44].
People with brain tumor often felt like a burden to their family
during this time and were concerned that their illness placed
too much responsibility on certain members such as their
spouse. Relationship strain and feelings of frustration regarding
the need for greater dependence on others was common
[35,40,45]. Some coped by contributing in any way that they
were able to mitigate the social role changes; for example:
‘‘I get heaps of support from them, but its sympathy which
I don’t want. Since this started (wife) hasn’t cooked a meal, I’ve
cooked all the meals, I’m not going to let her carry on and
I hate sympathy’’ [44, p. 116].
The reactions of others surrounding the illness varied, and peo-
ple with brain tumor reported instances where friends and family
were supportive or unsupportive [32]. Supportive reactions
included listening and offering practical support, whereas unhelp-
ful reactions included giving advice, downplaying the seriousness
of the situation or describing negative outcomes of other people
with brain tumor [30,32,37]. Several studies highlighted that the
invisibility of symptoms resulted in people from their social net-
work dismissing the seriousness of the illness [30,37,46]. In more
extreme circumstances people faced social exclusion due to
stigma associated with the brain tumor. A participant in a study
conducted in India reported: “I am taking treatment for brain can-
cer. I am not able to go and attend my relative's marriage. My
family is telling that I did sin that's the reason I got cancer. My
neighbors also keep gossiping and not talking to me after diagno-
sis of cancer” [45, p. 75]. In another study [31] people experienced
stigma related to a perception that brain tumor was contagious,
or caused mental slowness whereby people felt condescended to
in conversation.
People with brain tumor expressed concern for others in consid-
ering the impact of the illness on loved ones [32,44]. People were
particularly concerned with how children would cope with the
news of their diagnosis, physical scars left from treatment [46]
and frightening symptoms such as seizures [43,44]. For example:
“Would I have a seizure, because I wanted to tell my children,
what to do if they’re home alone with me and something hap-
pens” [44, p. 115]. People with brain tumor varied in how and
when they communicated the news of their diagnosis to loved
ones, with some deciding to be direct and upfront about the ser-
iousness of brain tumor and others electing to withhold informa-
tion to protect family members [32].
Although people mainly relied on their preexisting social net-
works in the early illness phase, new social contacts also emerged
that were based on relationships forged in treatment settings [30].
Meeting other people with a similar illness provided a sense of
affinity and was a source of comfort whilst in a primary care set-
ting. Although meeting others validated some peoples’ experien-
ces, such contact could also cause distress when it reminded
them of the seriousness of their illness [29].
Navigating the new reality of life
After the primary treatment phase was completed and there
was less time focused on attending appointments, people
strived to make sense of a new reality of life with brain tumor.
Although treatment had ceased or was less intensive the endur-
ing physical, cognitive and psychological impact of brain tumor
became salient. For most people, there was a desire to resume
their pre-illness lifestyle, including normal social roles and activ-
ities [34]. However, they often discovered that it was more diffi-
cult to attend social outings to maintain friendships and make
new friends [42].
Indeed, most studies described barriers to social reengagement
across physical, cognitive and psychological domains. Physical
symptoms such as weakness, paralysis, fatigue and seizures were
identified as a primary barrier to social reintegration [30,34,35,
42,43,47]: “We stopped doing that because it’s … likes the pubs
and all that sort of stuff, just gave up that because you cannae
[cannot] really get into that at all” [34, p. 376]. Physical and cogni-
tive symptoms precluded many people with brain tumor from
driving, reducing the possibility of spontaneous socializing and
connecting with friends and family [29,30,33,42,43]. In addition to

the tangible barriers that physical and cognitive symptoms pre-
sented, people avoided social situations due to feeling self-con-
scious about these symptoms. Fear that they may fall and
embarrass themselves or experience cognitive deficits (e.g., mem-
ory loss) and a concern that they may be perceived as mentally ill
resulted in social avoidance [30,43,45]. Additionally, people with
brain tumor reported that some friends and family members
avoided them due to their own anxiety or discomfort [31,33,42]:
“Oh well, friends don’t come any more. They don’t come often
because they don’t want to disturb me. I might be asleep or
I might be not too well to talk to them or lie down on the bed
and talk to them … All of those little things. I can’t walk” [31].
Changes in physical abilities, cognitive status and personality
resulted in loss of and changes in social roles for most people with
brain tumor [30,33,35,37,42]. Family roles changed whereby
spouses or children took on the role of caregiver [30,42], which
sometimes led to a change in relationship dynamics [33] and the
person feeling no longer needed by others [42]. Sterckx et al. [33]
reported that overly high levels of support contributed to people
feeling disregarded and a sense of being “on the sidelines of their
own life” [33, p. 386]. People with brain tumor often found it diffi-
cult to return to work as planned, and reluctantly ceased work or
returned at a reduced capacity, changing their role as the family
“breadwinner” [30,37].
Brain tumor had varied impacts on relationships, which
included relationship loss, strain, maintenance or strengthening. For
some, relationships and social groups were diminished or lost; “A
lot of the superficial acquaintances you have, they’ve disappeared,
because people get frightened if you’re ill. Just disappeared. But
it’s nothing worth bothering about” [42, p. 733]. Strain was often
reported by spouses and other family members due to stress,
financial difficulty and effects of brain tumor such as personality
changes and fatigue [32,37]. Enduring friendships were perceived
as vital for coping and wellbeing [30]. Although some couples
reported a loss of intimacy or closeness in their relationship
[30,33], others perceived that they became closer and more loving
towards each other [32,47] “It’s brought us closer together. That’s
the positive side of serious illness, you know, it’s made for more
loving interactions” [32, p. 131]. In a prospective study of how
couples adjust over time to high grade glioma Salander and Spetz
[48] identified four main communication patterns, namely: (1) the
person with brain tumor appears to lack awareness of the serious-
ness of the illness, the partner is aware but pretends not to be;
(2) both are aware, but the person with brain tumor does not
want to share; they drift apart; (3) both are aware and, although
they may not talk openly, there is a “joint platform” for coping;
and (4) neither person appears to be aware; they carry on living
as before.
As time progressed, some people with brain tumor experi-
enced a degree of functional recovery or stabilization of symp-
toms that allowed gradual and selective social reengagement
[33,43]. They were able to reconnect with some friends, take small
trips or join new clubs and social activities [35,38]. People with
persisting functional impairments needed to find ways of adapting
or choose new activities that they could manage such as lighter
duties at work, activities involving less physical exertion and
accepting assistance from friends [36,43]. Adjusting expectations
of themselves in roles and relationships and being flexible in pur-
suing alternative activities allowed people to connect with others
in a meaningful way. Salander et al. [36] described one partic-
ipant’s experience: “He soon resumed work on a part-time basis,
and also tried to resume his leisure activities. He was no longer
able to build model planes, but instead took part of the
THE SOCIAL TRAJECTORY OF BRAIN TUMOUR 9
administrative duties of the club. He also rejoined his moose-hunt-
ing team, although his partners had to assist him” [36, p. 594].
This process of adaptation was made easier when members of
their social network were willing to accommodate the needs of
the person with brain tumor by altering or substituting activities.
People also described strategies they employed to enhance social
participation such as taking notes and using diaries to manage
cognitive difficulties [42], pacing to manage fatigue [32] and edu-
cating those around them on how best to provide support
[36,42]: “I’ve told my employer and everybody I work with straight
out. I maybe can’t find words, get easily irritated, that sort of
thing” [42, p. 733]. Some people preferred interacting with others
with shared or similar experiences, thus seeking social affinity with
people with brain tumor through support groups [42,43].
Social survivorship vs. separation
A number of studies described the enduring social impact of liv-
ing with brain tumor [30,32,33,36,49]. This theme was character-
ized by disease progression and functional decline for many, with
ongoing challenges to social connection and/or positive social
adaptation and growth. Hence, this theme reflected considerable
variability in experiences for people with diverse types and grades
of brain tumor. For some, ongoing barriers to social connection
were experienced due to chronic symptoms and functional impair-
ments that became worse with aging [30]. Yet, Salander and
Bergenstein [36] noted that some people maintained social con-
nections even in the context of serious functional impairments or
decline. Some people were able to adapt to role changes over
time, citing external resources such as friends and family as signifi-
cant in becoming a “survivor” [30, p. 272].
Many people wished to reciprocate the support they received
throughout their illness by writing a book, setting up a support
group or becoming a peer mentor for those newly diagnosed
with brain tumor [30,32,43]. This experience of both giving and
receiving support allowed people to derive positive meaning or
purpose from their illness [30,32,42]: “I can help others who have
been there or who are there. I feel like we’re in a club, so to
speak, the ‘Survivor’s Club’. I can speak to them on a different
level than I could Joe on the street because I know what it’s like
to be in my position” [30, p. 272].
For many people, there was increased appreciation of, and
new meaning derived from relationships [30,49]. Proximity to
death evoked a new zest for life, a change in values and
renewed meaning in relationships. The value of close relationships
became salient as people focused on living in the present and
gaining satisfaction from time spent with family and children
[49]. Relationships that were already cohesive continued to
strengthen, and gave new meaning to life [37,49]. People who
recognized that death was inevitable feared leaving loved ones
behind more than death itself [33]: “because dying itself, I don't
think it hurts. It is just (blows out her breath) and it's over. In
fact, that doesn't scare me, dying itself.” Interviewer: “And what
does scare you?” Participant: “Everything (the people) you have
to leave behind, because you are never going to see them any-
more. The bond gets broken. And that will be the worst part, I
think. If I cry at that moment, that will be the reason” [33, p.
385]. Some people wanted to talk with family members about
the future after their death, recognizing that loved ones eventu-
ally move on with their lives and forge new relationships [32].
During the end of life phase when physical and cognitive
decline was marked, people’s immediate social contact typically
reduced to those most close to them. Ultimately, some people
10 L. CUBIS ET AL.
with malignant brain tumors became confined to their bed and
unable to communicate [34].
Discussion
Brain tumor is a complex illness that represents a “double threat”
– endangering both a person’s survival and identity due to phys-
ical, cognitive and personality changes that alter self-defining
qualities [49]. Social neuroscience research has demonstrated that
maintaining connections with valued groups can buffer against
threats to wellbeing for those with chronic illness [12,13]. The 21
studies in this meta-synthesis explored the lived experiences of
people with brain tumor in the following contexts: death anxiety
[49], psychosocial needs [45], treatment beliefs [41], information
and support requirements [31,33,35,39,40,44], perceived illness
related problems [29,42,47], quality of life [43,47], life experiences
[33,36,38,46]; communicating with loved ones [48] and personal
and social adjustment [32,34,36,37].
Despite the varied focus and diverse socio-cultural settings (see
Table 1) for these studies, overarching themes emerged that
depict the social trajectory of brain tumor. In particular, the theme
life disrupted represented changes in relationships and social roles
shortly after diagnosis and during the initial treatment period.
Later in the illness people’s lives were disrupted once again as
they experienced tumor regrowth or progression. The theme navi-
gating the new reality of life depicted changes in social networks
that occurred as the functional impairments and effects of treat-
ment became known. The theme social survivorship vs. separation
was characterized by ongoing barriers to social participation for
some, as well as positive adaptation to the illness which was
aided by stable core relationships. People derived meaning from
close relationships in the face of functional decline with the know-
ledge that they had little time left with their loves ones.
The review findings highlighted that people with brain tumor
draw upon preexisting social networks early in the illness, and
that both existing social connections and newly formed ones are
instrumental in supporting peoples’ adjustment in the longer
term. However, social contacts and participation levels are com-
monly diminished. Barriers to maintaining social connection
include the functional impairments arising from brain tumor and
its treatment. These present both tangible (e.g., fatigue, inability
to drive) and psychological barriers (e.g., fear and embarrassment
regarding symptoms) to social participation. Some people per-
ceive stigma associated with their illness, which may lead to social
avoidance and, in some cases, being excluded by others. This was
particularly evident from the study conducted in India in which
some family members viewed the brain tumor as a sin [45]. The
detrimental impact of stigma on social functioning in various can-
cer populations has previously been described [50,51], including
brain tumor [52].
The loss of valued social roles and increased dependence on
others was distressing for people with brain tumor and led them
to feel disregarded and no longer needed [33,42]. According to
Social Identity Theory [11], social groups help us to understand
who we are and to feel as though we matter to others. In times
of adversity people draw upon their social networks for support
to cope with and adapt to changes. The loss of social groups dur-
ing these times is therefore particularly detrimental to people’s
well-being [13,16]. The present review highlighted that people
with brain tumor endeavor to maintain valued social connections,
often through gradual and selective re-engagement in activities.
They maintained social connection by adjusting their goals and
expectations of social activities and relationships. Further, accom-
modations made by members of their social network (e.g.,
willingness to participate in modified activities or to assist with
transport) enabled greater social participation for the person with
brain tumor. Relationships that withstood the strain of the illness
often became stronger and were highly valued [32,49].
The present findings on the pivotal influence of social connec-
tion to well-being in the context of brain tumor are consistent
with research on adjustment to other chronic and life threatening
illnesses, such as multiple sclerosis [53], various types of cancer
[26], stroke [18,19], and brain injury [54]. Although previous brain
tumor research highlighted the importance of relationships and
social support [10,55,56], the present metasynthesis provides a
more in-depth account of the social impact of brain tumor
throughout the illness.
Some limitations of the review related to its scope are import-
ant to highlight. The views and experiences of the social networks
(e.g., family and friends) of people with brain tumor were not
explored or represented. Studies focusing on both people with
brain tumor and their caregivers were excluded from the review
where data specific to the participants with brain tumor could not
be distinguished (e.g., Lipsman) [57]. Numerous studies have
investigated the adjustment and support needs of family care-
givers in this population [58,59]. Ownsworth, Goadby and
Chambers [58] found that caregivers perceived their support
needs to be closely intertwined with, yet distinct from those of
the person with brain tumor. Research on changes in caregivers’
social networks would add to the current conceptualization of the
social trajectory of brain tumor. As a further consideration, the
studies in this review included participants at varying phases of
their illness and diverse tumor characteristics, including malignant
glioma [30,33,35,36,38,41,44,45,48,49], nonmalignant tumors
[39,40,46], low-grade gliomas [29,43], and mixed tumor grades
[31,32,34,37,42,47]. Therefore, the themes identified across these
studies apply broadly to people with primary brain tumor, rather
than depicting the social experiences of people with a particular
tumor type.
Although studies included in the review were conducted in
nine different countries (i.e., Sweden, Finland, Denmark, Belgium,
India, UK, US, Australia, Canada) and diverse settings, we excluded
articles that were not published in English. Hence, the review find-
ings may not be as applicable to other socio-cultural settings. It is
also important to recognize that the social impact of brain tumor
may be influenced by medical advances and societal changes. In
particular, the findings of older studies in this review may not
reflect advances in the neuro-oncology field where new treat-
ments are associated with survival benefits and reduced toxicity
and functional impairments [60,61]. Further, older studies may not
reflect the potential positive effect of internet-based support and
social media on peoples’ ability to maintain or grow their social
networks.
Notwithstanding these issues, this present metasynthesis pro-
vides novel insights into the social trajectory of brain tumor.
A robust search strategy was employed and two researchers inde-
pendently reviewed full-text articles against the inclusion criteria
to minimize the risk of bias. Critical appraisal of the included stud-
ies highlighted that the standard of reporting was generally high,
although less information was reported on the research team and
reflexivity, and for data collection and data analysis. Synthesis of
qualitative research is contingent on the quality and interpretation
of primary data, and the subsequent interpretation of the inte-
grated data by the authors of the synthesis. In the present meta-
synthesis, data extraction and synthesis were undertaken by a
Clinical Neuropsychologist (TO) and a PhD candidate in Clinical
Psychology (LC); both of whom have experience in working with
people with brain tumor and qualitative research.

In terms of practice implications, the present findings highlight
various physical, cognitive and psychological barriers to maintain-
ing social connections after brain tumor. There is potential for
these barriers to be addressed by supportive care interventions,
for which there have been some key advances over the past dec-
ade [62]. Education and information provision has been found to
support people’s understanding of their illness, symptoms
and treatment [63]. A controlled trial demonstrated that multi-
disciplinary rehabilitation enhances symptom management and
facilitates gains in physical and cognitive functioning [64]. A psy-
chotherapy intervention focusing on existential well-being was
found to improve mental health and quality of life [7]. There is
also preliminary support for the benefits of family-based support
for managing cognitive and behavioral difficulties related to brain
tumor [65]. Further, Khan et al. [66] evaluated a peer support pro-
gram embedded in multi-disciplinary rehabilitation. Participants
were encouraged to express their feelings and share coping strat-
egies for managing issues such as personality and behavioral
changes associated with their illness. The program evaluation
identified significant gains in participants’ emotional functioning
and quality life. However, the impact on relationships and levels
of social participation were not examined.
Despite emerging evidence regarding the importance of social
groups in adjustment to chronic illness [13,19], relationships and
social networks are seldom of focus in brain tumor care.
Importantly, clinical care guidelines for the neuro-oncology popu-
lation highlight the need to address psychosocial adjustment and
survivorship issues, such as providing caregiver support (see
Chambers et al. [51]). However, greater recognition of the import-
ance of people’s social networks for well-being after brain tumor
is needed by health care professionals involved in all phases of
care. Professionals may provide education directly to friends and
family or support the person with brain tumor to communicate
the effects of his/her illness and preferences for social activities.
This information may enable family members and friends to adjust
their expectations, modify activities and provide appropriate sup-
port. The evaluation of interventions for supporting people with
brain tumor to maintain existing social networks and develop new
connections is a promising initiative for future research. As
depicted by the social survivorship theme (giving and receiving
support), people with brain tumor often seek opportunities to
contribute to others' well-being. Initiatives that promote people’s
active involvement in their community (e.g., advocacy, peer sup-
port, education, volunteering, fundraising) can build new social
networks and foster a sense of survivorship and reciprocity [67].
Conclusions
This review provides the first synthesis of qualitative studies
depicting the social impact of brain tumor. The social trajectory of
brain tumor is characterized by the experience of life being dis-
rupted, navigating the new reality of life; and social survivorship
versus separation. Health care professionals across all phases of
care can benefit from a greater awareness of the themes illus-
trated in this review. Improved understanding of the barriers and
facilitators for staying connected with important social groups
after brain tumor may guide interventions that enhance well-
being through maintained social integration.
Acknowledgements
Preparation of this paper was supported by a Griffith University
Postgraduate Research Scholarship (Health) held by the first
author.
THE SOCIAL TRAJECTORY OF BRAIN TUMOUR 11
Disclosure statement
The authors report no declarations of interest.
Funding
This was supported by a Griffith University.
ORCID
Lee Cubis http://orcid.org/0000-0001-6346-4409
Tamara Ownsworth http://orcid.org/0000-0003-1835-7094
Mark B. Pinkham http://orcid.org/0000-0001-8886-728X
Suzanne Chambers http://orcid.org/0000-0003-2369-6111
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