Introduction
Palliative care is a multidisciplinary care given to
prevent or to relieve the symptoms likely to occur in
people with a serious illness and to improve their quality of life.[] Palliative care is becoming increasingly
common for cancer patients, the second most common
cause of deaths both in Turkey and in other countries in
the world. In parallel with the increases in the number
of these services, the terminal period prolongs and thus healthcare costs increase, the length of hospital stays
decreases and home care services become increasingly
important. Due to aforementioned reasons, cancer
which requires palliative care affects not only the patient
but also his/her family members, and the patient"s
relatives take more responsibilities to meet the care
needs of the patient.[-] The daily life of caregivers
undertaking responsibility to provide healthcare for a
person with a chronic illness is affected, their social and
family life is interrupted, their productivity decreases,
they may lose their jobs, or their role may change.
[-] Presence of metastasis, worsening of prognosis,
prolongation of the duration of the disease and the patient's
stress and anxiety adversely affect the psychological
state of caregivers. Although all these unfavorable
conditions have no clinical symptoms, they sometimes
may bring about physical or psychosomatic problems,
depending on the burden of the caregiver. It is known
that caregivers experience anxiety, depression, fatigue,
role conflict, social isolation and many other difficulties
more than do patients during the course of the disease.[-] A study[] reports that, of the caregivers,
more than 50% experience negative emotional problems
resulting from caregiving and 33% experience
negative physical health problems. These results show
that it is necessary to assess the quality of life of caregivers.
Indeed, studies conducted with different samples
have shown that the quality of life of caregivers has decreased.[,] Two studies conducted with the caregivers
of cancer patients[,] demonstrated that the
quality of life of caregivers who did not receive support
from others and had difficulty fulfilling their responsibilities
was low. Several other studies have also demonstrated
that the degree of the caregiver"s closeness to the
patient and some of his/her socio-demographic characteristics
such as gender,[-] older age,[,] low
level of education,[] lack of social security, employment
status,[] poor economic status,[,] cancer
stage of the patient to whom he/she gives care,[]
provision of healthcare to a male patient,[] and being
the first-degree relative of the patient[] adversely
affect the caregiver"s quality of life.[,,]
Patient care includes provision of emotional, physical
or financial support such as the coordination of the
health care and some of the social services the patient
receives, maintenance of routine health care (provision
of medication, treatment, observation, etc.), provision
of personal care (bathing, feeding, putting on dresses,
going to the toilet, cleaning after toilet), transportation,
doing the shopping, doing trivial household chores,
money management, financial support and sharing the same house. Therefore, the needs of caregivers who
assume responsibility to fulfil all these tasks should
be determined and caregivers should be empowered.
[,] Home care nurses should evaluate the patient
and the family together by giving holistic care. Nurses
working in a palliative care clinic or providing home
care should ensure that the patient leads a quality life
by holistically, systematically and timely assessing the
symptoms of a cancer patient under treatment, providing
individualized nursing care and training the patient
and family on symptom control. Interventions to be accomplished
in company with multidisciplinary teams
will positively contribute to the quality of life of both
the patient and the caregiver. To plan the interventions
regarding the relatives of cancer patients requiring palliative
care, it is important to determine their needs.
Although considerable research has been performed
with cancer patients,[,,,,,,] rather less
research has been performed on the needs of caregivers
of palliative care patients and their quality of life and
our search for studies on this issue demonstrated that
only one qualitative study was conducted to identify
the needs of caregivers.[] This present study, expected
to guide initiatives to be organized and to contribute
to the relevant literature, was conducted to identify difficulties
experienced by and quality of life of relatives of
cancer patients requiring palliative care at home.
Methods
This descriptive study was carried out in the palliative
care service of a training and research hospital between
September 1, 2014 and November 1, 2014. The palliative
care service has 8 beds in which the health personnel
work on 12-hour shifts (between 8 a.m. and 4 p.m.,
and between 4 p.m. and 8 a.m.). The study population
consisted of inpatients with cancer who received palliative
care in the palliative care service and their caregivers.
Of them, 60 patients in the 18 and over age group
diagnosed with cancer who received inpatient palliative
care between September 1, 2014 and November1,
2014 and their caregivers comprised the study sample.
Of the caregivers, those whose patients were not in the
terminal period, who had a speaking, hearing or communication
problem, who had a psychiatric disorder
and/or who did not want to participate in the study
were not included in the study.
Data collection tools used in the study
In the study, the "Questionnaire to Assess Difficulties
of Home Care Providers" and the "Caregiver Quality of Life Index - Cancer Scale - CQOLC" were used to
collect data.
Questionnaire to Assess Challenges of Home
Care Providers: The questionnaire was developed by
the two researchers in the light of the relevant literature
and similar studies.[2,4,6-10,16] One of the researchers
had a four-year medical oncology experience and a
3-year palliative care service experience. The other researcher
had an 11-year clinical oncology experience.
After the questionnaire was prepared, opinions of
two oncologists, three academicians and three clinical
nurse specialists were obtained, and then the items
in the questionnaire were revised in accordance with
their the suggestions. The questionnaire is made up of
two sections including open and closed-ended questions
about the patient and the caregiver. While the
first part questioned the sociodemographic and disease
characteristics of the patient, the second part included
32 items questioning sociodemographic characteristics
of the caregivers (age, gender, education,
health status and health perception of the caregiver,
and the degree of kinship between the caregiver and
patient, etc.), length of healthcare provision, home
care practices, and difficulties in the provision of
home care.
The Caregiver Quality of Life Index Cancer
Scale -CQOLC: The scale was developed by Weitzner
et al., in 1999 to assess physical, emotional, social, and
family aspects of the quality of life of caregivers of
cancer patients.[] Yakar and Pınar (2009) conducted
the Turkish language equivalence, reliability and
validity studies of the scale,[] ranges from 0 to
140. The higher the score obtained from the scale is,
the better the quality of life of the caregiver is. Permission to use the scale in the study was obtained from
Yakar through email.
Data collection process
Prior to data collection, ethical approval was obtained
from the Non-interventional Clinical Research Ethics
Committee (Date: August 28, 2014, Number: 197),
permission from the training and research hospital administration,
and written consent from the participating
caregivers. The data were collected through faceto-
face interviews in a room in the clinic, where the
interviews would not be interrupted by the third parties.
Each interview lasted 15-25 minutes.
Statistical analysis
The data were analyzed using the SPSS 22.0 program.
Numbers, percentage distribution and mean values
were used for the descriptive data. The quantitative data
were normally distributed (Kolmogorov-Smirnov>
0.05). The relationship between age and the scores obtained
from the CQOLC scale and its subscales was
analyzed with the Pearson correlation analysis. The
relationship between gender and employment status
and the scores obtained from the CQOLC scale and its
subscales was analyzed with the t-test. The relationship
between education and the scores obtained from the
CQOLC scale and its subscales was analyzed with the
variance analysis. At the 95% confidence interval, the P
value of <0.05 was considered statistically significant.
Results
Sociodemographic characteristics
of the patients and their caregivers
The mean age of the participating patients was 56.2±1.7
50%. Of the patients, 50% were female, 81.7% were married,
81.7% were primary school graduates, 78.3% were
unemployed, 50% had an income equal to their expenses
and 48.3% had an income less than their expenses.
The cancer types whose incidences ranked the first, second
and third were breast (20%), stomach (16.7%) and
lung cancer (15%) respectively. The leading reason for
admission to the hospital was symptomatic complaints
(75%). The mean duration of being diagnosed with cancer
was 12 months (min. 1 month, max. 60 months).
The mean age of the caregivers was 44.4±13.2. Of them,
56.7% were between ages of 40 and 60 years, 35% were
under the age of 40, 75% were female, 81.7% were married
and had children, 76.7% were primary school graduates
and 61.3% were unemployed, 50% had an income
equal to their expenses, 46.7% were the spouses of the patients, 30% were the children of the patients, and 15%
were siblings of the patients. The mean duration of the
provision of the care was 10 months (min. 2 months,
max. 84 months) (Table 1).
Table 1: Distribution of sociodemographic characteristics
of the patients and caregivers (n=60)
Results on challenges experienced by the caregivers
The challenges faced by the caregivers were as follows:
While 81.8% of the employed caregivers could
not go to work, and thus they had problems at their
work place, 75% of them could not fulfill their responsibilities
due to the disease and treatment process. Of
the caregivers, 31.7% suffered from stress more due
to providing care to a patient with cancer, 13.3% got sick more often, and 51.8% had difficulty in marriage /
partnership relationships.
While the 23.3% of the caregivers complained that
they could not spare enough time for their spouses,
21% complained about lack of communication between
them and their spouses, and 53.3% had difficulties
in their relationships with other family
members. The greatest challenges the caregivers experienced
while they gave care were "transporting
the patient to the hospital (78.3%), convincing the
patient to have the treatment (58.3%) and feeding the patient (51.7%)". The leading difficulties the caregivers
experienced while they provided home care for
their patients were pain management (80%), nausea
/ vomiting management (70%), defecation (56.7%),
mobilization (35%) and psychological support (30%).
The least challenging problems they had were hygiene
practices (8.3%) and communication (10%) (Table 2).
Of the caregivers who participated in the survey, 51.7
stated that there was no other family member to give
care for the patient. While 96.7% of the caregivers did
not utilize home care services, 98.3% of the rest of the
caregivers stated that they utilized home care services
but not regularly. Only two of the patients / caregivers
utilized home care services.
Table 2: Distributions of findings related to the difficulties
experienced by patients" relatives providing
home care (n=60)
While 43.3% of the caregivers did not get any information
on home care, 56.7% of them did. Of those who
received information, 85.2% received information only
on medication use, 23.5% only on nutrition and 26.5%
both on medication use and on nutrition.
The caregivers stated that while 26.7% of the patients
were completely dependent on others while
bathing and 23.3% while getting dressed and going to
the toilet, 61.7% of them were semi-dependent on others
while bathing, 63.3% while getting dressed, 65%
while going to the toilet, 71.7% while getting around
and 65% while eating and drinking (Table 3).
Table 3: Distribution of Dependency Status of Individuals
Receiving Healthcare (n=60)
Results on the Scores the Caregivers
Received from the Caregiver Quality of
Life Index - Cancer Scale - CQOLC
The mean score the caregivers received from the
CQOLC was 49.7±12.7. The mean score they received
from the subscales of the CQOLC were 21.58±17.2
from the burden subscale, 39.7±24.4 from the disruptiveness
subscale, 57.7±32.5 from the financial concern
subscale and 116.1±12.7 from the positive adaptation
subscale. Their quality of life was generally low (Table
4). Variables such as gender, age and employment status
did not affect the mean scores obtained from the
CQOLC and its subscales (p>0.05). However, positive
adaptation subscale scores of the caregivers who
were high school and university graduates were higher
(F=4.34, p=0.018) (Table 5).
Table 4: Distribution of Scores Obtained by the Caregivers
from the Caregiver Quality of Life Index -
Cancer Scale - CQOLC and its subscales (n=60)
Table 5: Distribution of CQOLC Scores According to Some Socio-demographic Characteristics of the Participants (n=60)
Discussion
Cancer is a chronic illness that causes patients and their
caregivers to lose control over their lives, affects their
social, work, family / marital life adversely, disrupts
their health and reduces their quality of life. On the
other hand, palliative care services aiming to ensure the best quality of life and to prevent or relieve symptoms
that may occur in cancer patients are becoming increasingly
widespread. The results of this present study carried
out to determine the difficulties and quality of life
of 60 caregivers of cancer patients receiving palliative
care at home were discussed in the light of the findings.
In Turkish culture, provision of healthcare is traditionally
considered as the responsibility of women, and
thus men have difficulty in providing healthcare more
than do women.[] As is seen in the study results, because
the majority of caregivers were housewives and
unemployed, they were the ones who undertook the
responsibility for the provision of healthcare. There
are other national[] and international[,,] studies
showing that women are more involved in giving
healthcare. In addition, women not only give healthcare,
but also continue working, doing housework and
fulfilling their childcare responsibilities. The problems
associated with all these roles and tasks and the low
level of education would make it difficult for women to
cope with these problems and increase their risk of developing
stress symptoms. Therefore, it becomes essential
for health professionals to view female healthcare providers
as a special group of caregivers, to take into
account their needs and to support them.
A person"s economic status is one of the most important
sociodemographic variables affecting his/her
quality of life. As a chronic disease, cancer brings significant
economic burden both to the patient and to
the relatives giving care during diagnosis, treatment
and provision of healthcare. This burden can be due
indirect expenses (e.g, costs for meals during hospitalization,
transport costs, etc.) and direct expenses (diagnosis,
treatment and healthcare costs etc.) not paid
by their health insurance. Of the relatives of cancer
patients, those with low socioeconomic status carry
the burden of care more, suffer from negative health
conditions more, have problems in accessing treatment
and social facilities, and have a financial burden
preventing them from coping.[,,,] That the
participating caregivers" income was either equal to or
lower than their expenses and that their mean score for
the financial concern subscale of the CQOLC was low
(57.7) suggest that their quality of life decreased and
their healthcare-related burden was high. In addition,
the vast majority of employed caregivers (81.8%) had
problems going to work (direct costs) and commuting
to and from the hospital (indirect costs) (Table 2). Because
of all these difficulties, the caregivers were forced
to change their living conditions, which negatively affected
their quality of life. These results indicate the
importance of social services in palliative care services.
Providing healthcare can prevent a caregiver from
participating in social life activities (work, recreation,
pleasure trips), from maintaining previous relationships
and from attending social environments due
to his/her recent responsibilities and roles.[] Thus,
establishing a balance between the physical and emotional
needs of caregivers will reduce the stress they
experience and will promote the quality of life of the
patients they look after.[,,] In the present study,
approximately half of the caregivers gave care to their
spouses for about one year and did not receive any help
from any other person. One-third of them suffered
from stress more during the care-giving process, lacked
time to fulfill responsibilities other than care giving,
failed to establish satisfactory communication with
his/her spouse or other family members and assumed
more responsibilities. In addition, the low scores the
caregivers obtained from the burden and disruptiveness
subscales of the CQOLC suggest that caregivers
had a very low quality of life. Given all these issues, it
is extremely important to relieve caregivers with social
support systems from time to time. Caregivers who use
their social support systems effectively are expected to
adapt to their new lives better, to cope with stress easily,
to spare more time for themselves and for their relatives
and thus to have better quality of life.
Failure to control the symptoms can lead to a feeling
of weakness in the life of the patient and his / her
family, despair, loss in beliefs and loss of communication and confidence between the patient and caregivers.
Therefore, accurate assessment of a cancer patient's
symptoms by his/her caregiver gains importance.[]
In the present study, caregivers had difficulty managing
symptoms of pain, nausea, vomiting and constipation
at home, almost all of them did not utilize home
care services, one-third of them were not knowledgeable
about these services, and only one-third of them
were informed about medication use. At this point,
it is extremely important for palliative care teams to
prepare and implement a well-organized training plan
that approaches the management of the cancer patient's
symptoms holistically, to evaluate the outcomes of the
training plan, and to inform caregivers. The patient
should be supported on symptom management to be
implemented at discharge and at home. The results of
the present study[,] show that training given on
symptom management was effective.
Home healthcare services given by a professional
team will reduce the frequency of hospital admissions
and improve the quality of life of patients and caregivers,
and meet health care expectations of patients and
caregivers.[]
Studies[,] on patients receiving home care services
have shown that cancer patients are more dependent
on someone else"s care when performing self-care
activities than are other patient groups. In the present
study, the patients were semi-dependent on others in
performing many activities of daily living, and the issues
that were most difficult in the provision of healthcare
were related to both medical services and social
service applications including instrumental activities of
daily living. These findings are important results that
increase caregivers" burden and adversely affect their
quality of life and highlight the importance of providing
medical and social services together in home care
services. The analysis of the CQOLC scale scores suggests
that the quality of life of the caregivers who participated
in the present study in all the subscales was low.
This result correlates with the results of two other studies
which investigated the quality of life of caregivers
of cancer patients.[,] Positive adaptation subscalerelated
quality of life of caregivers with higher levels of
education was higher, which suggests that individuals
with higher levels of education might have better coping
capacities. However, that the participating caregivers"
other socio-demographic characteristics did not
affect their quality of life scale scores was thought to be
due to the small size of the study sample. On the other
hand, it has been reported that some socio-demographic
characteristics of the caregiver and degree of closeness to the caregiver have an impact on their quality of
life.[,,,] It is suggested to perform studies with
larger samples to reveal these relationships better.
The present study has various limitations. Firstly,
since the palliative care services have just started to
be installed in hospitals, their bed capacities are still
small. Therefore, the size of the study sample was not
at a desired level. Secondly, since the other studies on
caregivers" needs and quality of life were conducted in
cancer patient clinics without palliative care services,
the findings of the present study were compared with
the results of the mentioned studies.
Conclusion
The results of this present study conducted with caregivers
of palliative care patients revealed that the caregivers
were not knowledgeable enough about home care, and
thus they had difficulties in maintaining family relationships,
fulfilling their responsibilities, managing the
symptoms of patients and they had low level of quality
of life in all domains except for the positive adaptation
domain. In this respect, it seems inevitable to train caregivers
on home care, symptom management, disease
process and health services available, to provide counseling,
and to support family members by health care
team, relatives and friends. On the other hand, expanding
the scope and content of palliative care and home
care services with experienced teams knowledgeable
about this patient group not only will meet the expectations
of patients / caregivers but also will contribute to
the enhancement of the quality of life of these people.
Disclosure Statement
The authors declare no conflicts of interest.
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