Received: 5 January 2021

DOI: 10.1002/pon.5651

ORIGINAL ARTICLE
- Accepted: 2 February 2021

The unmet needs of carers of patients diagnosed with

sarcoma: A qualitative study

Rhys Weaver1 | Moira O'Connor2,3 | Georgia KB. Halkett2,3 |

4,5,6
Richard Carey Smith

1
Curtin School of Nursing, Faculty of Health
Sciences, Curtin University, Perth, Western Abstract
Australia, Australia
Objective: Sarcoma is a rare cancer that may result in reduced mobility, social
2
Curtin School of Population Health, Faculty of
isolation, poorer mental health, and ongoing medical issues for patients. Family
Health Sciences, Curtin University, Perth,
Western Australia, Australia carers play a crucial role in supporting patients throughout their sarcoma journey.
3
WA Centre for Cancer Prevention Research Despite the aggressive and debilitating nature of the disease, the unmet needs of
Unit (WACPRU), Curtin University, Perth,
Western Australia, Australia
these carers are yet to be explored. The aim of this study was to explore the unmet
4
Department of Orthopaedic Surgery, Sir needs of carers of patients diagnosed with sarcoma.
Charles Gairdner Hospital, Perth, Western Methods: An exploratory qualitative research design with a social constructionist
Australia, Australia
5
epistemology was used. Participants were carers of patients diagnosed with a sar-
Perth Children's Hospital, Perth, Western
Australia, Australia coma (n = 33). Semi‐structured interviews were conducted with carers of patients
6
Perth Orthopaedic and Sports Medicine who completed treatment for sarcoma and also bereaved carers (BC). Interviews
Centre, Perth, Western Australia, Australia
were transcribed verbatim and analysed using thematic analysis.
Correspondence Findings: Four overarching themes were identified: support with medical aspects of
Georgia Halkett, School of Nursing, Faculty of caregiving, support for self, needing information about the patient, and financial
Health Sciences, Curtin University, GPO Box
U1987, Perth, WA 6845, Australia.
support. Participants recognised that they needed psychosocial support, however,
Email: g.halkett@curtin.edu.au many were reluctant to access support as they perceived this to be prioritising their
own needs instead of the patients'. They also needed more information about the
Funding information
Abbie Basson Sarcoma Foundation (Sock it to patients' disease and how to navigate the health system.
Sarcoma!) Conclusions: Family carers for patients with sarcoma have onerous responsibilities
that affect their ability to access care for themselves and their family. Providing
more holistic patient care and carer‐specific information and training could reduce
carer burden. Establishing support groups specific to carers and BC of patients
diagnosed with sarcoma could provide opportunities for social interaction and
psychosocial support.

KEYWORDS
caregivers, interviews, oncology, qualitative research, rare cancer, sarcoma, unmet needs

1 | BACKGROUND experience prolonged diagnoses and debilitating disease and treat-

ment‐related adverse effects, accounting for significantly poorer
Sarcomas are a group of rare and aggressive primary bone and soft health‐related quality of life.3–5 Treatment involves extensive re-

-
1
tissue tumours. While sarcoma only makes up 1% of all cancer di- sections, chemotherapy and radiation therapy.6 Patients experience
agnoses, it accounts for 15% of all paediatric cancers.2 Patients short‐ and long‐term functional issues as a result of the cancer and

Psycho‐Oncology. 2021;30:1095–1103. wileyonlinelibrary.com/journal/pon © 2021 John Wiley & Sons Ltd. 1095

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treatment.7 The unmet needs of patients include a lack of informa-
tion, financial support, psychosocial support and access to health
services.8 Due to the functionality issues and unmet needs in this
population, patients may require higher levels of support from
informal family carers.9
“Carers” refers to informal caregivers, such as a partner, parent
or other relative.10 Carers for patients with cancer may provide the
patient with social support, personal care, manage medications,
prepare food and symptom management.11–13 As a result of care-
giving, carers can experience reduced quality of life, poorer mental
and physical health and fatigue, as well as a range of unmet
needs.13 It is well established that the needs of carers are often
overlooked and unmet needs may occur when carers do not receive
14,15
support. A systematic review examining the unmet needs of
carers for adults diagnosed with cancer found unmet needs in six
domains: comprehensive cancer care, emotional and psychological,
impact on daily activities, relationship, information and spiritual.16
Carers were reluctant to address their unmet needs as they felt this
would be prioritising their own needs above the patient and also
felt that there was inadequate information about supports
available.16
Carers have different unmet needs across cancer groups and
treatments. For example, carers of patients with brain cancer re-
ported needing information about the patients' cognitive
changes.17,18 An increased carer burden is associated with patients
who are receiving palliative care or have more unmet needs.9
When patients are distressed, carers may avoid reporting their
own unmet needs as they are focused on the patients' well‐being
instead of their own.19 Carers of patients with head and neck
cancer avoided discussing their concerns openly with their loved
ones as they were concerned about being a burden to the
patient.20
Although there is a growing body of literature exploring the
needs of carers, in general, there is a paucity of studies exploring
the unmet needs of carers of people with sarcoma. Given that
sarcoma has a high proportion of children and young adult pa-
tients, is aggressive and results in long‐term functional issues,
carers may have a unique experience compared to other cancers.
In addition, patients diagnosed with sarcoma require more urgent
and complex treatments, so carers may have more carer re-
sponsibilities and burden.21 This study aimed to explore the unmet
needs of carers of patients diagnosed with sarcoma.
2 | METHODS
2.1 | Design
An exploratory qualitative research design with a social construc-
tionist epistemology was used. A social constructionist lens considers
participants as having unique experiences; these unique experiences
shapes the way they construct meaning.22 This was important as we
needed to form a cohesive understanding from a diverse range of
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ET AL.
perspectives. The researchers positioned themselves as being part of
the research process, whereby participants could share their expe-
riences. Through this, the researchers co‐constructed meaning by
asking questions and directing the focus of the interviews.23 Meaning
was also co‐constructed through the coding process that was facili-
tated through reflexive journaling.
2.2 | Participants
Participants were eligible if they could converse freely in English, were
over the age of 16 at the time of interview and had cared for a friend/
relative who had been diagnosed with sarcoma within the last 15 years.
This included bereaved carers for patients who had died. Carers
identified themselves through the Abby Basson Sarcoma Foundation
(Sock it to Sarcoma!). Carers were also identified by patients referred
through a tertiary hospital in Perth, Western Australia (WA).
Recruitment was open to carers living interstate. A total of 33 carers
were interviewed (24 face‐to‐face and 9 phone interviews).
2.3 | Data collection
Prior to interviewing, the participants were informed of the re-
searcher's credentials, occupation and place of occupation. Partici-
pants provided informed consent before interviews commenced.
Interviews were facilitated with an interview guide (see Supporting
Information S1). The interview guide was reviewed by consumers
(previous patients diagnosed with sarcoma and carers) prior to
interviewing. R. Weaver, G. Halkett and M. O'Connor conducted the
interviews, each having experience conducting research interviews
and undertaking qualitative analysis. Interviews were conducted
between 25 May 2018 and 3 April 2019 at a mutually convenient
location (e.g., their home) or over the phone. Interviews were
recorded and transcribed verbatim. Mean interview time was 56 min
(SD = 17, min = 24, max = 90).
2.4 | Data analysis
Themes were developed using Braun and Clarke's six phases for
thematic analysis.24 The six phases were as follows: data familiar-
isation, initial coding, searching for themes, reviewing the themes,
naming themes and writing the themes. Similar codes were consoli-
dated and formed themes representing patterns in the data.
2.5 | Data saturation
Data saturation occurs when interviews no longer provide new infor-
mation relevant to the research question.25 To identify data saturation,
interviewing and data analysis were conducted concurrently after the
first interview was completed. When an interview did not generate any
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WEAVER ET AL.
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TABLE 1 Carer demographics (n = 17)

Characteristic Number

Age (years) (missing = 2)

Mean 51 (SD = 11.26, min = 22, max = 66)

Sex

Male 5

Female 12

Duration as a carer (months) (missing = 2)

Mean (range) 33 (SD = 25.27, min = 2, max = 96)

Time since diagnosis (months) (missing = 1)

Mean (range) 42 (SD = 24.32, min = 5, max = 98)

Relationship to patient

Mother 9

Father 1

Wife or female partner 3

Husband or male partner 3

Brother 1

Age of patient at diagnosis (years)

Mean 29 (SD = 22.24, min = 2, max = 67)

Tumour location (missing = 2)

Lower extremities 10

Head and neck 2

Upper extremities 2

Torso 1

Type

Bone 9

Soft tissue 7

Both 1

new codes, an additional interview was conducted to confirm satura-
tion. Recruitment ceased once data saturation was reached.
2.6 | Rigour
The researchers engaged in processes to enhance the credibility of
the study. Data were coded by two researchers (R. Weaver and G.
Halkett) who reached agreement on the themes. Themes were also
developed through team discussions and the wider authorship team
further reviewed all the themes. Team discussions and reflexive
journaling on the process and context were also used to monitor
potential biases throughout the research process and reflect on the
emerging codes and themes. Reporting was informed by the
consolidated criterion for reporting qualitative research checklist.26
2.7 | Ethical considerations
Ethical approval was granted from a university (HRE2018‐0246) and
participating tertiary hospital (EC00271). Data were only accessible
to members of the research team and identifiable information was
removed from the reported findings.
3 | FINDINGS
Carer and Bereaved Carer demographics are reported in Tables 1
and 2, respectively. Four overarching themes describing the unmet
needs of carers were identified: support with medical aspects of
caregiving, support for self, needing information about the patient
and financial support (Figure 1). Carer (C) and Bereaved Carer (BC)
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TABLE 2 Bereaved Carer demographics (n = 16) exemplars are supported with the participant's relationship to the
patient.
Characteristic Number

Age (years)

Mean 52 (SD = 13.50, min = 21, max = 66) 3.1 | Support with medical aspects of caregiving
Sex

Male 7
This theme describes the participants' need for support with the
caregiving role, especially when providing medical or psychosocial
Female 9
support to the patient. Given the short interval between diagnosis
Duration as a carer (months) (missing = 1) and treatment, several participants reflected that they did not have
Mean (range) 25 (SD = 13.06, min = 4, max = 52) time to learn how to best support the patient. This was particularly
Time since death (months) apparent for BC as the patient's health declined rapidly:

Mean (range) 51 (SD = 31.72, min = 3, max = 99)

From diagnosis, it just happened so quickly, and we were
Relationship to patient
really at a loss as to what we could do as the ones that
Mother 6 would be there to support her. BC10, Mother.
Father 3
Some participants felt nervous providing care at home as they
Husband or male partner 3
did not have experience providing medical care:
Sister 2

Brother 1 [Palliative care service] said, ‘No, just rip it apart and stick
Daughter 1 the morphine patch on her.’ I was just nervous, trying to
take care of someone. BC06, Husband.
Primary tumour location

Pelvis 8
Other participants needed assistance helping the patient with
Lower extremities 6 daily activities:
Spine 1

Torso 1 I loved having him at home, but towards the end he was
really struggling to go to the toilet or anything. We were

FIGURE 1 Thematic map of unmet needs of carers


WEAVER ET AL.
having to lift him and he was a big boy; six foot one. BC02,
Mother.
Carers explained that they still felt responsible for the patient's
health even after the patient had moved on from treatment:
We hang on to the big story and they live for the moment
and their life now. That's the big difference between being
a parent or a carer and being a child that's gone through it.
C10, Father
3.1.1 | Navigating after‐care
A subtheme for support with medical aspects of caregiving is the
need for assistance with navigating after‐care. Carers felt unpre-
pared after the patient was discharged from hospital as they
become the patient's primary carer despite lacking training for the
role:
It's really common to get to the end of your treatment
and you feel like the security blanket is taken away,
and I'm going to go home with this kid who is really
skinny and who's been through a major trauma, and I'm
not trained, I'm just his mum. C06, Mother.
Participants explained that there needed to be a more structured
after‐care transition. Additional assistance was needed to guide
carers with finding appropriate services and resources:
The end of treatment was probably the hardest because
there really is no well‐established transition after‐care…
[Hospitals] really need somebody to guide families
through the process of going into community‐based care
and finding resources. C09, Mother.
3.2 | Support for self
Participants described a tension between the need for psychological
support and reluctance to seek support. Some participants wanted
time for themselves, but felt guilty about taking time for themselves:
I probably just needed a bit of a breather, like what's out
there for me? But then I think also that's kind of selfish
because I'm not the one going through it… so I just grin and
bear it and I get on with it. C01, Wife.
Other participants did not think about seeking support for
themselves while the patient was undergoing treatment. It appeared
that participants viewed their role as one to provide support rather
than receive support:
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I didn't see [support] as an element for myself. I wasn't
there to be supported; I was there to support and that was
a hole which I didn't recognise until later. BC14, Father.
Because patients required treatment urgently, carers often did
not have the time to access support for themselves:
Everything was happening so fast so you couldn't think
about, ‘Oh, maybe I could go to a support group or talk to
other people who had been through it’. BC11, Sister.
This was exacerbated by participants perceiving that support
services were not intended for them:
I did use a cancer support service a couple of times, but I
never really felt like it was for me, as I'm not the patient. I
always felt kind of weird, like I was imposing on resources.
C08, Brother.
3.2.1 | Solidarity
A subtheme of support for self was the need for solidarity. Partici-
pants reflected that it would have been beneficial to have a support
system of fellow carers of patients diagnosed with sarcoma. It
appeared difficult for participants to find people who could empa-
thise with their experiences:
Nobody else knows how devastating it actually is. I think
everybody sympathises, but very few people can empathise
really. C06, Mother.
Participants suggested providing access to support groups for
families impacted by sarcoma to share experiences and information:
[Hospitals] should have some sort of meetings with people
or families who have gone through it (sarcoma). Just
knowing what to expect. Just knowing that there's some-
one that can relate to you. BC12, Sister.
3.2.2 | Support for family
An additional subtheme raised by participants was the need for
support for their family. Parent carers indicated that their family
needed psychosocial support while they were caregiving for their
relative. However, they were unable to organise support for their
family because they had to prioritise the needs of the patient:
We're a bit guilty of not realising the impact it might have
on our oldest son. He's just about to start seeing a play
therapist because he's got lots of anxiety… The reason he

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hasn't started yet is because I don't have time. How am I
meant to take him to appointments? I have to take [pa-
tient] to his medical appointments, how do you get all this
time off work? C15, Mother.
3.3 | Needing information about the patient
Almost all participants described difficulties obtaining informa-
tion about the patient's disease, treatment and recovery.
Starting at diagnosis, participants had limited knowledge of
sarcoma:
I was like, ‘What is [osteosarcoma]?’ It could have been a
Chinese noodle dish. I had no idea… C03, Mother.
It was difficult to find accurate information about the patient's
particular histology:
It was frustrating and confusing at times and we had to
rely very heavily on the clinical team for getting specifics
around the issues of sarcoma in more general terms, but
Ewing's sarcoma in particular. BC14, Father.
Knowledge was important when making decisions around
treatment:
Give me the information and then I make a decision or I
discuss it with my daughter, and we make the best possible
decision for the best possible outcome. Give us the
knowledge, we make the decisions. C11, Mother.
Some participants felt unprepared for the patient's treatment
and wanted more information about recovery:
One of our primary concerns going into surgery is that
things weren't well explained to us until the day before
surgery, so we were quite stressed about exactly what was
going to happen and how long he would be in surgery… We
knew the mechanics of [the surgery], but we didn't know
the rest ‐ how long his recovery would be or when he'd be
up on his feet again. C09, Mother.
Additional information was needed about how to give care
safely:
Just to have some information about the do's and the
don'ts and what to be mindful of, what to be careful of…
What do we need to do to keep her safe and to be able to
support her and do things for her, but also not put her at
risk? BC11, Sister.
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ET AL.
3.4 | Financial support
Participants discussed the significant financial impact of being a
carer. This theme was particularly evident in the experiences of
carers who had children. Patients needed to have treatment urgently
after diagnosis and many participants had to stop working to begin
caregiving for their relative:
I had to give up work straight away. Financially it was
awful… How else do you pay for stuff if you lost your salary
tomorrow? C15, Mother.
It was difficult to resume work even several years later as par-
ticipants did not feel ready to go back to work:
I was starting to think about re‐entering work and no, I
didn't get there, which is kind of hard too because I'm now
three years past his diagnosis, but it has taken three years
to get my head to a reasonable level of sanity. C06,
Mother.
Participants outlined various costs related to their carer role
including parking, food, medication, and rehabilitation:
Her meds were expensive because she had a lot of meds
and not all of them were completely covered so we'd be
paying well over the top for a prescription. BC01, Mother.
Just parking alone would have been $2000 extra on top of
all our other cost. I couldn't leave the hospital to go and get
food either. So sustaining our health would have been
either by purchasing Uber eats or eating junk food, both of
which are expensive options when you are already losing
income…[Patient] needed to see an OT outside of the
hospital, and those sessions were $100 out of pocket after
the Medicare (publically funded program in Australia that
rebates part of the cost of medical care) rebate. So there's
$1000 gone for ten sessions. C09, Mother.
There appeared to be long‐term financial impacts from the cost
of being a carer:
There has been a huge financial impact, I've lost out on
super (Australian retirement fund accrued from a
percentage of an employee's salary) because I
stopped working. We've still got a mortgage which we
hadn't planned on at this time in our lives. BC10,
Mother.
Despite being a full‐time carer, participants found it challenging
to access financial support:

WEAVER ET AL.
My biggest hurdle was Centrelink (Australian social se-
curity service), because we had no income… I felt there
was no one out there who could point me in the right di-
rection. I'd tried the social worker at [the hospital]. She
didn't seem to know. C01, Wife.
4 | DISCUSSION
This study aimed to explore the unmet needs of carers for people
with sarcoma. Consistent with literature on common cancers, par-
ticipants had unmet needs relating to information, psychosocial
support and feeling unprepared for caregiving.27 In the current study,
the speed at which carers adopted and adapted to their caregiving
role was particularly salient. Similar to findings with carers of pa-
tients with high‐grade glioma, carers had to adjust to rapid change
and immediately needed information and supports to assist with
caregiving.18,28 The urgency of assuming the carer role in our study
made it challenging for carers to consider what supports they needed
at the time.
Although carers are an essential part of the healthcare system,
there has historically been little recognition of the needs of carers.29
Carers may feel invisible to health professionals and receive limited
support options compared to the patient, even though they can
experience equal or greater distress.30,31 Carers may also be reluc-
tant to receive or access support themselves; in the current study,
the following reasons were given: not realising they needed support,
feeling guilty about seeking support, lacking access to supports and
feeling like supports were not intended for them. Previous studies
have similarly reported that cancer carers may not seek support as
32,33
they are worried about detracting from the patient's needs.
participants' reluctance to receive support may be driven by the way
they conceptualise and identify with the carer role. From an identity
theory perspective, carers conceptualise their role to include certain
responsibilities and activities, such as the need to put their own
needs second to the patient.34 By identifying as a carer, the partici-
pants likely did not view receiving support as part of their role. This
was evidenced by statements where participants described them-
selves as one to give support rather than receive support. As the
carers moved further away from the patient's treatment they
appeared to identify less with the carer role and started to consider
what supports they needed.
Another challenging aspect of caregiving was after the patient
moved from hospital care into outpatient care. Participants felt un-
certain about having the patient at home and several considered this
to be the most challenging period of time when caregiving. The
increased difficulty in caregiving contrasts with more common can-
cers, where the carers' unmet needs generally reduce with time.
This may be because of the patients' increased reliance on the carer
due to impaired mobility, additional medical issues and social isola-
tion.36 This was also exacerbated for BC who had to organise palli-
ative care, manage the patients' worsening health and deal with the
patient's impending death.
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- 1101
The current findings indicate that carers have unique unmet
needs compared to patients diagnosed with sarcoma.8 Patients and
carers wanted support from other patients and carers, respectively.
However, many of the carers were reluctant to access psychosocial
support for themselves, at least while the patient was undergoing
treatment. The focus of patients and carers needs also differed in
survivorship. Patients were focused on returning to work or school,
whereas carers were preoccupied with the patients' health and still
felt responsible for caregiving.
4.1 | Limitations
Most participants self‐nominated to participate through the Sock it to
Sarcoma Foundation, which may have reduced the variability of ex-
periences. The majority of carers were no longer actively caregiving for
their family member, and they may have had additional unmet needs
that they forgot or have since addressed. Most participants were fe-
male, likely due to the majority of informal caregivers being female.21
Further research sampling participants across a range of relationships,
diagnoses, treatments, treatment dates and durations and locations
may provide further understanding of carer needs.
4.2 | Clinical implications
The Australian optimal care guidelines for managing sarcoma rec-
ommends that carers receive support for themselves and with
caregiving.37 However, carers may be unwilling to access support for
themselves. There has been growing interest in digital interventions
The for carers who do not have the time or access to face‐to‐face sup-
port.10,38 An online intervention could be trialled with carers of pa-
tients diagnosed with sarcoma to see whether it is appealing and
beneficial for them. It is also necessary to improve the uptake of
support interventions for carers. It is important that health pro-
fessionals understand that carers may be apprehensive about
receiving support so they can normalise access and referrals to care.
Carers should be informed that accessing supports is a legitimate
part of caregiving and that improving their well‐being is also bene-
ficial to the patient.29 Including sarcoma patients and carers to co‐
design a digital intervention may help create a resource that carers
are willing to use.13
Participants also needed additional information, financial sup-
port and assistance with the medical aspects of caregiving. In WA,
patients diagnosed with sarcoma and their families are supported
by the sarcoma clinical nurse consultant (SCNC).39 While some
participants were a caregiver before the SCNC role was established,
35
others may have been missed or did not receive enough support
from the SCNC, particularly due to the focus on the patient not the
carer. Sarcoma nurse coordinators should be adopting a family‐
centred approach, such as by providing carers with care plans to
outline their needs, supports available and survivorship goals.32 For
example, carers who have children may benefit from hospital‐based

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psychosocial support services for themselves and their children and
the incorporation of a social worker to help them access financial
support.
5 | CONCLUSION
Carers needed to rapidly adopt and adapt to the caregiver role and
experienced a range of unmet needs. This included a lack of infor-
mation and support for both themselves and the patient. However,
carers were preoccupied with caregiving and indicated that they
either did not have the time or were reluctant to seek out support for
themselves. Future research is needed to track unmet needs starting
at diagnosis and to trial support interventions for carers.
A C K N O WL ED GE M EN T S
This study was funded by the Abbie Basson Sarcoma Foundation
(Sock it to Sarcoma!). Associate Professor Georgia Halkett is
currently supported by a Cancer Council of Western Australia
Research Fellowship. The authors thank all the carers who partici-
pated and contributed to the study. The authors also thank Mandy
Basson and Jacqueline Woods for their assistance in recruiting
participants.
C O N F LI C T S O F I N T E R ES T
The authors declare that there are no conflict of interests.
D A TA A V AIL A B IL I T Y S T A T EM E N T
The data supporting the findings are available from the corre-
sponding author upon reasonable request.
O R C ID
Rhys Weaver https://orcid.org/0000-0003-2322-5379
Moira O'Connor https://orcid.org/0000-0002-7298-5553
Georgia KB. Halkett https://orcid.org/0000-0003-4065-4044
Richard Carey Smith https://orcid.org/0000-0002-2410-0239
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S U P P O R T I N G I N F O RM A T I O N
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porting Information section at the end of this article.
How to cite this article: Weaver R, O'Connor M,
Halkett GKB, Carey Smith R. The unmet needs of carers of
patients diagnosed with sarcoma: A qualitative study. Psycho‐
Oncology. 2021;30:1095–1103. https://doi.org/10.1002/
pon.5651