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Analysis of the Correlation between the Level of Posttraumatic Growth and Social Support among Caregivers of Children with Acute Leukemia

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We investigate the current situation of stress burden and quality of life of primary caregivers of children with leukemia and analyze the correlation between their stress burden and quality of life, using the phenomenological research method in qualitative research. The posttraumatic growth experiences of the parents of children with leukemia included life perceptions (appreciation of life, change in priority of important things in life, and adjustment of self to reality); personal empowerment (increased sense of self-reliance and increased sense of self-achievement); and improvement of interpersonal relationships (increased family harmony, valuing parent-child bonding, benefiting from professional support from other parents and medical staff, and increased sense of empathy and altruism). The posttraumatic growth experiences of parents of children with leukemia are based on their roles (parenting) and responsibilities and can be used as an important basis for future trauma interventions, as well as an entry point for exploring the posttraumatic growth potential of parents of children with leukemia and ultimately improving the posttraumatic growth of parents of children with leukemia.
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Research Article
Analysis of the Correlation between the Level of Posttraumatic
Growth and Social Support among Caregivers of Children with
Acute Leukemia
Qiurong Chen,
1
,
2
Xujia Xiao,
3
Yaling Zhang,
1
,
2
and Chao Lin
2
,
4
1
Department of Pediatric Hematologic Oncology Nursing, West China Second University Hospital,
Sichuan University/West China School of Nursing, Sichuan University, Chengdu 610041, Sichuan, China
2
Key Laboratory of Birth Defects and Related Diseases of Women and Children, Sichuan University, Ministry of Education,
Chengdu 610041, Sichuan, China
3
West China School of Nursing, Sichuan University, Chengdu 610041, Sichuan, China
4
Department of Pediatric Hematologic Oncology, West China Second University Hospital, Sichuan University, Chengdu 610041,
Sichuan, China
Correspondence should be addressed to Chao Lin; linchao@scu.edu.cn
Received 5 July 2022; Revised 26 July 2022; Accepted 17 August 2022; Published 7 September 2022
Academic Editor: Sandip K. Mishra
Copyright ©2022 Qiurong Chen et al. is is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
We investigate the current situation of stress burden and quality of life of primary caregivers of children with leukemia and analyze
the correlation between their stress burden and quality of life, using the phenomenological research method in qualitative
research. e posttraumatic growth experiences of the parents of children with leukemia included life perceptions (appreciation of
life, change in priority of important things in life, and adjustment of self to reality); personal empowerment (increased sense of
self-reliance and increased sense of self-achievement); and improvement of interpersonal relationships (increased family har-
mony, valuing parent-child bonding, benefiting from professional support from other parents and medical staff, and increased
sense of empathy and altruism). e posttraumatic growth experiences of parents of children with leukemia are based on their
roles (parenting) and responsibilities and can be used as an important basis for future trauma interventions, as well as an entry
point for exploring the posttraumatic growth potential of parents of children with leukemia and ultimately improving the
posttraumatic growth of parents of children with leukemia.
1. Introduction
According to statistics, the incidence of leukemia in children
under 14 years of age is 25% [1, 2] and requires prolonged
care by their relatives, especially during hospitalization,
causing numerous physical and psychological problems for
the child’s primary caregiver, such as varying degrees of
stress, anxiety, frustration, disappointment, and denial
during the early stages of diagnosis, even after the child’s
disease is controlled [3, 4]. ese problems may persist for
years even after the child’s disease is controlled [5, 6]. When
a child is diagnosed with leukemia, the entire family may also
face challenges such as unemployment, helplessness,
financial distress, disrupted relationships, or inability to
participate properly in social activities [7].
e stressful, emotional reactions of the primary
caregiver to such problems are referred to as “caregiver
reactions” [8]. e quality of life (QOL) of primary
caregivers of patients with acute leukemia has long been a
priority for clinical caregivers [9]. Childhood leukemia is
a chronic, systemic, and recurrent disease, and parents
play an important role in the long-term course of the
child’s illness. Previously, domestic and international
studies on parents of affected children have often focused
only on their negative emotions, cognition, and behavior
[10].
Hindawi
Contrast Media & Molecular Imaging
Volume 2022, Article ID 7456284, 7 pages
https://doi.org/10.1155/2022/7456284
In recent years, influenced by positive psychology re-
search, foreign researchers have shifted from focusing only
on stress, deficits, and illness to tapping into an individual’s
own strengths and potential, and more and more studies
have found that a high-stress life event and the threat of
death or illness can be a trauma or an opportunity for self-
growth that renews self-perceptions and thus makes positive
adjustments in psychological behavior [11, 12]. We refer to
this growth as “posttraumatic growth (PTG). Posttraumatic
growth is a theoretical concept born in the American cul-
tural context, and the perception of traumatic events, the
content of posttraumatic growth, and the influencing factors
involved in the growth process may differ in different cul-
tural contexts.
Acute leukemia is a global problem, and according to the
International Agency for Acute Leukemia Research (IARC),
22.2 million people are expected to suffer from acute leukemia
by 2030 [13]. e incidence and mortality rate of acute
leukemia in China is increasing year by year, and the statistics
of acute leukemia in 2017 showed that 4.29 million new cases
of acute leukemia occur each year, accounting for 20% of new
cases and 2.81 million deaths worldwide [14]. Acute leukemia
has become a major cause of death and a major public health
problem for the population in China [15]. With the con-
tinuous improvement of medical technology and improve-
ment, the 5-year survival rate of acute leukemia patients is as
high as 68%, in which the careful care of caregivers is one of
the important reasons for their extended survival time.
Caregivers can have a negative impact on their physical and
mental health due to the heavy caregiving tasks and psy-
chological stress [16, 17]. Related studies confirmed that the
negative psychological state of caregivers decreases the quality
of care, which in turn reduces the quality of life of patients
with acute leukemia. Although caregivers of patients with
acute leukemia face great difficulties and challenges in the
process of caregiving, some of them also perceive positive
meaning and make positive changes in their lives, which is
called “sense of benefit from illness,” also known as benefit
finding (BF), in which individuals perceive their personal
experiences from negative life events such as illness or trauma.
is positive change is called “illness benefit,” also known as
benefit finding (BF), which is a cognitive and behavioral
adaptation process in which individuals perceive personal,
social, psychological, and spiritual benefits from the experi-
ence of negative life events such as illness or trauma [18, 19].
Studies have shown that the lower the sense of benefit from
illness, the worse the physical and mental health. Social
support is an important predictor of perceived illness benefit,
and caregivers with higher social support have a higher
perception of illness benefit, as well as a significantly im-
proved quality of life for the caregiver [20]. Self-efficacy re-
flects the extent to which individuals realize their potential,
which can be improved through learning, and higher self-
efficacy indicates that acute leukemia caregivers have greater
self-confidence in their ability to cope with caregiving tasks
[7, 2123]. Previous studies have focused on correlations
between variables, but fewer studies have examined how self-
efficacy plays a role in the relationship between social support
and perceived benefit from illness among caregivers of
hospitalized acute leukemia patients. In this paper, using a
phenomenological approach in qualitative research, 286
caregivers of hospitalized acute leukemia patients were se-
lected as the study population, and a one-on-one interview
was conducted using a semi-structured interview outline
guided by selecting one of the parents of the affected children
to participate in the interview [24]. e aim of this study was
to investigate the intrinsic link between self-efficacy, social
support, and sense of illness benefit among caregivers of
hospitalized acute leukemia patients, and to clarify their
mediating effects, with the aim of improving caregivers’ self-
efficacy by increasing their social support, thus providing a
theoretical basis for enhancing their sense of illness benefit
[25].
2. Materials and Methods
2.1. General Information. A convenience sampling method
was used to select 286 caregivers of hospitalized acute
leukemia patients in our hospital as the study population.
Inclusion criteria for caregivers are as follows: patients
with pathologically diagnosed acute leukemia; caregivers
aged 18 years; patients’ primary caregiver, who could be
the patient’s spouse, children, or other relatives, to under-
take the primary caregiving tasks; patients with unpaid
care; patients with ability to read and understand text;
and patients with informed consent and cooperation with
the survey. Exclusion criteria are as follows: significant
negative life events in the last 3 months and mental or
intellectual disability.
A purposive sample of 10 fathers or mothers of children
with leukemia who attended the pediatric department of
Peking Union Medical College Hospital from May 2015 to
February 2016 was selected for the interview. Inclusion
criteria are as follows: (i) the child’s disease met the diag-
nostic criteria for leukemia; (ii) they assumed the primary
responsibility for caring for the child (at least 6 hours per
day); and (iii) they were willing and able to fully express their
true experiences and feelings. e sample size was based on
data saturation.
2.2. Research Methodology. A semi-structured interview was
used to collect data, guided by the phenomenological ap-
proach in qualitative research. In this paper, a one-on-one
interview was used, in which one of the parents of the af-
fected child was selected to participate in the interview, and
the number of interviewees was determined to reach data
saturation. Each interviewee was referred to as a case in the
study, and interviewers were numbered in order from A–J.
e researcher used a semi-structured interview outline as a
guide to conduct the interviews. How did you feel when
your child’s illness was first diagnosed? What changes did
you experience during the course of your child’s illness?
Did you have any positive/positive changes during the
course of your child’s illness? What factors led you to
make these positive changes? Use the above questions to ask
parents of children with leukemia about their posttraumatic
growth experiences.
2Contrast Media & Molecular Imaging
2.3. Data Collection and Analysis Methods. e researcher
indicated the purpose of the study to the study participants,
signed an informed consent form, and agreed on the time
and place of the interview. Each interview was recorded for
30–45 minutes. e researcher listened carefully and
recorded the interview contents and the expressions and
emotional changes of the interviewees. After the interviews
were completed, the audio recordings were transcribed into
text and analyzed using Colaizzi’s analysis [12], and
meaningful statements that were consistent with the post-
traumatic growth experience of the parents of the children
with leukemia were extracted, summarized, refined, and
further formed into themes and thematic clusters for a
complete narrative. Finally, the results obtained were
returned to the interviewees to further verify the authenticity
of the content.
3. Research Tools
e Chinese version of the Benefits of Caregiver Illness Scale
(BFS-C) is used to understand the level of benefits of
caregiver illness. e Chinese version of the scale has 17
items, including three dimensions of personal growth (items
9–17), interpersonal improvement (items 4–8), and accep-
tance (items 1–3). e scale uses the 5-point Likert scale,
with scores of 1–5 representing “not at all,” “a little,”
“moderately,” “a lot,” and “very much,” respectively. e
higher the score, the higher the level of the caregiver’s sense
of benefit from illness. Cronbach’s αcoefficient of the
Chinese version of the Sense of Benefit Scale is 0.819, with
good reliability and validity.
3.1. Social Support Rating Scale. e total social support
score, which is 66 out of 66. A total score of 22 is considered
low, 23–44 is medium, and 45–66 is high. e retest reli-
ability of the scale is 0.89–0.94, which is applicable to
Chinese population.
3.2. General Self-Efficacy Scale (GSES). e GSES was first
developed by Schwarzer, a German professor of psychology,
together with his colleagues, and the scale has been translated
into several languages and is widely used internationally. e
Chinese version of the GSES, which was translated and re-
vised in 2001, is a unidimensional scale with 10 items, and
each item is rated on a 4-point Likert scale, with scores from 1
to 4 representing “not at all correct,” “fairly correct,” “mostly
correct,” and “completely correct,” respectively. e lower the
score, the lower the level of general self-efficacy. A score of
<20 indicates a low level of general self-efficacy; a score of
2030 indicates a medium level; and a score of >30 indicates a
high level. After measurement, Cronbach’s αwas 0.87, and the
scale had good reliability.
4. Results
4.1. Scores of Perceived Disease Benefit, Social Support, and
Self-Efficacy of Caregivers of Hospitalized Acute Leukemia
Patients. Caregivers of hospitalized patients with acute
leukemia had a total score of (66.70 ±10.8) for perceived
benefit of illness, with scores for each dimension being
personal growth (35.2 ±6.7), interpersonal relationship
(21.2 ±3.4), and acceptance dimension (10.6 ±2.7); the
highest mean score for the interpersonal relationship di-
mension was (4.23 ±0.68); the lowest mean score for the
acceptance dimension was (2.11 ±0.54). e total score of
social support for caregivers of hospitalized acute leukemia
patients was (42.6 ±6.8), and the scores of each dimension
were (9.7 ±3.4) for objective support, (25.9 ±4.2) for sub-
jective support, and (7.02 ±1.83) for utilization of support;
among them, the mean score of the subjective support di-
mension entry was the highest (6.48 ±1.04); the mean score
of the utilization of support dimension entry was the lowest
(2.11 ±0.54). e lowest mean score was (2.33±0.61). e
total score of self-efficacy of caregivers of hospitalized acute
leukemia patients was (26.1 ±6.41).
4.2. Correlation Analysis of Caregivers’ Perceptions of Disease
Benefit, Social Support, and Self-Efficacy in Hospitalized Acute
Leukemia Patients. e results of this study showed that the
total illness benefit score and self-efficacy was positively
correlated with illness benefit, personal growth, interper-
sonal relationships, and acceptance, as shown in Table 1.
4.3. Self-Efficacy between Social Support and Perception of
Illness Benefit. e regression analysis showed that all four
standardized regression coefficients reached a significant
level (P<0.01), and the mediating effect of self-efficacy
between social support and perception of illness benefit is
shown in Table 2 and Figure 1.
4.4. Change in Priority of Important ings in Life. Prior to
the child’s illness, parents often have high expectations
and goals for themselves and for their child’s life, and the
child’s illness causes the hopes to be dashed. After a period
of self-adjustment, parents change their previous ranking
of priorities in life and become more aware of what is most
important in life. Most parents believe that being healthy
and having a happy life is the most important thing. For
example, Mother D said “Besides life and death, every-
thing else is trivial; to be alive, to be healthy and safe is the
most important thing.” Father E said “In the past, when
the child did not have the disease, I always thought of
working hard to save some money for the child in the
future, but later, when the child got sick, I did not want to
think so much, it does not matter how high or low the
income is, the family is healthy and happy life is the most
important.” In the face of the high cost of medical care for
their children, some parents say that money is the most
important thing. For example, Father F said “In the past,
the focus of life was food, clothing, housing and trans-
portation, but now I think money is the most important
thing, do everything to save up for the child’s next
treatment, as long as there is money, to come to the child’s
medical care” (Table 3).
Contrast Media & Molecular Imaging 3
Table 1: Correlation analysis of caregivers’ sense of illness benefit, social support, and self-efficacy in hospitalized acute leukemia patients.
Project Social
support
Subjective
support
Objective
support
Utilization of
support
Self-efficacy
disorder
Disease
benefit
Personal
growth
Interpersonal
relationship
Social support 1.00
Subjective support 0.83 1.00
Objective support 0.78 0.30 1.00
Utilization of
support 0.48 0.23 0.14 1.00
Self-efficacy
disorder 0.32 0.25 0.31 0.03 1.00
Disease benefit 0.21 0.19 0.18 0.12 0.17 1.00
Personal growth 0.23 0.22 0.18 0.02 0.30 1.00 1.00
Interpersonal
relationship 0.04 0.08 0.12 0.07 0.13 0.60 0.38 0.37
Table 2: Self-efficacy between social support and perceived benefit from illness.
Step Independent variable Dependent variable βS.E tPR
2
FP
Step 1 Social support Disease benefit 0.212 0.091 3.632 <0.001 0.045 13.20 <0.001
Step 2 Social support Self-efficacy 0.320 1.157 5.678 <0.001 0.103 32.192 <0.001
Step 3 Social support Disease benefit 0.234 0.036 3.924 <0.001 0.095 14.667 <0.001
Self efficacy
Social support Disease benefit
0.39
0.21
0.24
Figure 1: Model of the mediating effect of self-efficacy between caregiver social support and perception of disease benefit in patients with
acute leukemia.
Table 3: Demographic characteristics of the interviewees (n10).
Participant Parental
role
Age
(y)
Educational
level Occupation Marital
status Gender Age
(y)
Course of disease
(months) Disease diagnosis
A Mother 33 Undergraduate Liberal
professions Married Male 6 16 Juvenile idiopathic
arthritis
B Mother 45 Undergraduate Accounting Married Female 12 21 Systemic lupus
erythematosus
C Father 40 High school Individual Married Female 13 17 Systemic lupus
erythematosus
D Mother 41 Junior high
school Farmer Married Female 12 17 Takayasu arteritis
E Mother 45 Master Teacher Married Male 15 132 Systemic lupus
erythematosus
F Father 46 High school Farmer Married Female 17 54 Juvenile idiopathic
arthritis
4Contrast Media & Molecular Imaging
4.5. Adjustment of Self-Acceptance of Reality. Stress burden
and quality of life scores of primary caregivers of children
with leukemia. Caregiver quality of life scores (13.9 ±3.2)
and total stress burden scores averaged (72.6 ±11.7), as
shown in Table 4.
Pearson correlation analysis of stress burden and quality
of life of primary caregivers of children with leukemia
(Table 5).
4.6. Personal Empowerment. During the interview, some
parents (B, D, H, and I) expressed their reluctance to let
neighbors and friends know about their children’s illness
and their reluctance to communicate with others, trying to
alleviate their suffering by being alone. e distance from
social resources directly led to a decrease in the level of social
support and an increased sense of self-reliance. For example,
Mother I said “I don’t talk to my family now (about my
child’s illness) because I don’t want them to worry, and I talk
to my colleagues too.”
Mother B said “I don’t want everyone to know that my
child is sick, I just know how to solve the problem myself.” In
addition, a few parents of children with the disease said that
they received more social support at the beginning of the
disease, but in the long run, social support is difficult to
sustain, such as Father F said “When the child first got sick,
there were many friends who cared, but the disease cannot
be cured for a while, or at all, so who can visit you every day,
so to continue to live, you still have to count on yourself.”
As caregivers, the parents of the child should not only
take care of the child’s life, but also care about the child’s
mental and psychological state and good psychological
guidance. In addition, they have to learn about the disease,
home care, and medication, so that they can feel needed and
have a greater sense of self-fulfillment in the process of
caring for their children. For example, Mother B said “After
the disease, my child has been out of school, so I have to
tutor her homework and take up the task of educating her,
and I am the child’s teacher at home.” Father F: “My child
has a strong competitive mind, and since he got sick, he eats
less and doesn’t talk much. I as a parent is mainly to guide
him, psychologically comfort him, let him not anxious,
relaxed mind.” Mother E: “e child is quite afraid that her
classmates know she has a disease, usually she will hide it
from them, and every time she comes to the hospital, she will
also lie, in order to avoid the child living in a lie, I need to
help the child face bravely, I also have to be responsible for
the child’s psychological work, cannot be well after the
psychological problems.”
5. Discussion
5.1. Current Analysis of the Level of Disease Benefit Perception
among Caregivers of Hospitalized Acute Leukemia Patients.
e perception of disease benefit among caregivers of
hospitalized acute leukemia patients was moderate. e
results of this study showed that the total mean score of
perception of disease benefit among caregivers of hospi-
talized acute leukemia patients was (66.70 ±10.8), indicating
a moderate level of perception of disease benefit among
caregivers of hospitalized acute leukemia patients. Although
caregivers of hospitalized acute leukemia patients experience
negative effects such as financial burden and anxiety and
depression during the process of caregiving, caregivers also
perceive a sense of illness benefit and growth, such as
learning to accept reality, appreciate the meaning of life,
cherish the present moment, and have confidence and hope,
increased ability to actively learn and caregiving, perceived
multiple support from family, friends, and healthcare pro-
viders, and health-related cognitive behaviors. e percep-
tion of health-related cognitive behaviors improves [13].
Among the three dimensions of the BFS-C scale, the highest
score for the personal growth dimension may be related to
the following two factors e highest scores on the personal
growth dimension of the BFS-C scale may be related to the
fact that caregivers are able to self-regulate their negative
emotions and have improved self-control; the overall psy-
chological and spiritual growth of the caregiver as the
caregiving time increases, as well as the acquisition of
knowledge about the disease and caregiving skills.
5.2. Correlation Analysis of Caregiver’s Social Support, Self-
Efficacy, and Perception of Disease Benefit in Hospitalized
Acute Leukemia Patients. e results of this study showed
that social support and subjective and objective support
dimensions were positively correlated with the perception of
illness benefit, i.e., the higher the social support, the higher
the caregiver’s perception of illness benefit, which is con-
sistent with domestic and international studies [14]. Social
support is a multidimensional interaction established
through formal and informal interactions with other people
or organizations to obtain moral comfort, financial support,
and information support [15].
Social support can provide caregivers with knowledge of
disease treatment, effective caregiving skills, financial and
material assistance, and spiritual support, which can help to
reduce the psychological and financial burdens of help-
lessness, despair, and depression of caregiving patients, so
that they can cope with caregiving tasks in a positive frame of
mind, increase their confidence in caregiving, and easily
perceive positive changes. erefore, healthcare workers
understand and pay attention to the caregiver’s social
support during their interactions with the caregiver and
guide them to tap into more positive perceptions by in-
creasing their social support and reducing the perception of
negative emotions.
5.3. e Mediating Role of Self-Efficacy between Caregiver’s
Social Support and Perception of Disease Benefit in Patients
with Acute Leukemia. e analysis of the mediating effect
showed that self-efficacy partially mediated the effect be-
tween social support and perception of benefit from illness,
with the mediating effect accounting for 35.53% of the total
effect, indicating that social support can affect perception of
benefit from illness both directly and indirectly through the
mediating effect of self-efficacy, which is similar to the re-
sults of a related study in China [15]. Self-efficacy reflects the
Contrast Media & Molecular Imaging 5
degree to which an individual realizes his or her potential,
which can be improved through learning, and higher self-
efficacy indicates that acute leukemia caregivers are more
confident in their ability to cope with caregiving tasks [16].
When caregivers face frustration and poor mood, the higher
their perceived social support, the more they will make full
use of the various resources provided by healthcare pro-
fessionals, family members, and friends, so that their internal
self-efficacy will increase, they will take the initiative to learn
about disease treatment, master caregiving skills, improve
their caregiving adaptability, reduce anxiety and depression,
and other negative emotions, and, at the same time, enhance
the positive experience brought about by caregiving.
erefore, while providing a level of social support, clinical
healthcare workers can also mobilize their own potential
coping and problem-solving skills, enhance their self-con-
fidence, and improve their sense of self-efficacy, thus pro-
ducing positive changes and experiencing a greater sense of
benefit from the disease and providing good care for
patients.
Caregivers of hospitalized acute leukemia patients have
moderate levels of illness benefit perceptions, and social
support and self-efficacy are positively related to illness
benefit perceptions, with social support influencing illness
benefit perceptions through the mediating role of self-effi-
cacy. Healthcare professionals can take effective interven-
tions to improve caregivers’ perceptions of illness benefit,
starting from both social support and self-efficacy. In this
study, only one tertiary care hospital was selected for the
survey, and the sample was not representative enough. In
addition, this study only examined the relationship between
social support, self-efficacy, and sense of illness benefit and
did not delve into the effects of the variables on the sense of
illness benefit. erefore, subsequent studies can expand the
sample size and increase the variables to explore the path
analysis and mechanism of action among the variables.
Data Availability
Data sharing is not applicable to this article as no datasets
were generated or analyzed during the current study.
Conflicts of Interest
e authors declare that there are no conflicts of interest.
References
[1] M. Jia, J. Li, C. Chen, and F. Cao, “Post-traumatic stress
disorder symptoms in family caregivers of adult patients with
acute leukemia from a dyadic perspective,” Psycho-Oncology,
vol. 24, no. 12, pp. 1754–1760, 2015.
[2] E. Jayawickreme and L. E. Blackie, “Post–traumatic growth as
positive personality change: evidence, controversies and fu-
ture directions,” European Journal of Personality, vol. 28,
no. 4, pp. 312–331, 2014.
[3] R. Z. Luo, S. Zhang, and Y. H. Liu, “Short report: relationships
among resilience, social support, coping style and posttrau-
matic growth in hematopoietic stem cell transplantation
caregivers,” Psychology Health & Medicine, vol. 25, no. 4,
pp. 389–395, 2020.
[4] J. A. Kearney, C. G. Salley, and A. C. Muriel, “Standards of
psychosocial care for parents of children with cancer,” Pe-
diatric Blood and Cancer, vol. 62, no. S5, pp. S632–S683, 2015.
[5] C. Carmassi, V. Dell’Oste, C. Foghi et al., “Post-traumatic
stress reactions in caregivers of children and adolescents/
young adults with severe diseases: a systematic review of risk
Table 4: Caregiver stress burden and quality of life scores (points, x±s).
Dimension Number of entries Highest score Lowest score Average score
Total score of stress burden 20 104 38 72.3 ±15.9
Health and time burden 8 33 15 22.6 ±4.0
Financial burden 3 20 8 15.0 ±4.3
Lack of family support 6 18 5 11.6 ±3.7
Self-esteem 7 43 10 23.5 ±4.0
Quality of life 25 113 35 79.7 ±13.7
Physiological field 4 18 6 14.1 ±3.0
Psychological field 4 20 5 12.5 ±3.2
Independence 4 21 8 14.9 ±2.0
Social relations 4 19 5 13.0 ±2.6
Spirit 4 15 6 10.5 ±2.6
Environmental field 4 20 7 14.7 ±2.3
Table 5: Pearson correlation analysis of stress burden and quality of life of primary caregivers of children with leukemia (r).
Dimension Total score of stress burden Health and time burden Financial burden Lack of family support Self-esteem
Quality of life 0.57 0.53 0.68 0.58 0.54
Physiological field 0.48 0.50 0.02 0.14 0.15
Psychological field 0.69 0.52 0.55 0.63 0.15
Independence 0.45 0.64 0.14 0.69 0.06
Social relations 0.84 0.72 0.48 0.55 0.64
Environmental field 0.48 0.62 0.11 0.06 0.21
Spiritual field 0.10 0.54 0.10 0.14 0.15
6Contrast Media & Molecular Imaging
and protective factors,” International Journal of Environ-
mental Research and Public Health, vol. 18, no. 1, p. 189, 2020.
[6] S. Singer, H. G¨
otze, M. Buttst¨
adt et al., “A non-randomised
trial of an art therapy intervention for patients with hae-
matological malignancies to support post-traumatic growth,”
Journal of Health Psychology, vol. 18, no. 7, pp. 939–949, 2013.
[7] J. Liang, S. J. Lee, B. E. Storer et al., “Rates and risk factors for
post-traumatic stress disorder symptomatology among adult
hematopoietic cell transplant recipients and their informal
caregivers,” Biology of Blood and Marrow Transplantation,
vol. 25, no. 1, pp. 145–150, 2019.
[8] S. Grover, K. Rina, P. Malhotra, and A. Khadwal, “Caregiver
burden in the patients of acute myeloblastic leukemia,” Indian
Journal of Hematology and Blood Transfusion, vol. 35, no. 3,
pp. 437–445, 2019.
[9] T. Cassidy, “Benefit finding through caring: the cancer
caregiver experience,” Psychology and Health, vol. 28, no. 3,
pp. 250–266, 2013.
[10] R. Kumari, A. Kohli, P. Malhotra, S. Grover, and A. Khadwal,
“Burden of caregiving and its impact in the patients of acute
lymphoblastic leukemia,” Industrial Psychiatry Journal,
vol. 27, no. 2, p. 249, 2018.
[11] R. Masa’deh and S. Jarrah, “Post traumatic stress disorder in
parents of children with cancer in Jordan,” Archives of Psy-
chiatric Nursing, vol. 31, no. 1, pp. 8–12, 2017.
[12] S. Hussein, Y. Sadeh, R. Dekel et al., “Using a biopsychosocial
approach to examine differences in post-traumatic stress
symptoms between Arab and Jewish Israeli mothers following
a child’s traumatic medical event,” International Journal for
Equity in Health, vol. 20, no. 1, pp. 89–12, 2021.
[13] S. E. Wawrzynski, M. R. Schaefer, N. Schvaneveldt, and
M. A. Alderfer, “Social support and siblings of children with
cancer: a scoping review,” Psycho-Oncology, vol. 30, no. 8,
pp. 1232–1245, 2021.
[14] A. E. Kazak, A. N. Abrams, J. Banks et al., “Psychosocial
assessment as a standard of care in pediatric cancer,” Pediatric
Blood and Cancer, vol. 62, no. S5, pp. S426–S459, 2015.
[15] M. Kohlsdorf and ´
A. L. Costa Junior, “Coping strategies and
caregiver’s anxiety in pediatric oncohematology,” Psicologia:
Reflexão e Cr´
ıtica, vol. 24, no. 2, pp. 272–280, 2011.
[16] F. Menger, N. A. Mohammed Halim, B. Rimmer, and
L. Sharp, “Post-traumatic growth after cancer: a scoping re-
view of qualitative research,” Supportive Care in Cancer,
vol. 29, no. 11, pp. 7013–7027, 2021.
[17] I. Yalug, A. E. Tufan, K. Doksat, and K. Yalu˘
g, “Post-traumatic
stress disorder and post-traumatic stress symptoms in parents
of children with cancer: a review,” Neurology Psychiatry and
Brain Research, vol. 17, no. 1, pp. 27–31, 2011.
[18] S. He, L. M. You, J. Zheng, and Y. L. Bi, “Uncertainty and
personal growth through positive coping strategies among
Chinese parents of children with acute leukemia,” Cancer
Nursing, vol. 39, no. 3, pp. 205–212, 2016.
[19] C. Carmassi, M. Corsi, C. A. Bertelloni et al., “Post-traumatic
stress spectrum symptoms in parents of children affected by
epilepsy: gender differences,” Seizure, vol. 80, pp. 169–174,
2020.
[20] A. C. Steele, L. L. Mullins, A. J. Mullins, and A. C. Muriel,
“Psychosocial interventions and therapeutic support as a
standard of care in pediatric oncology,” Pediatric Blood and
Cancer, vol. 62, no. S5, pp. S585–S618, 2015.
[21] R. Nakajima-Yamaguchi, N. Morita, T. Nakao et al., “Parental
post-traumatic stress symptoms as predictors of psychosocial
problems in children treated for cancer,” International
Journal of Environmental Research and Public Health,
vol. 13.8, p. 812, 2016.
[22] C. Carmassi, C. Foghi, V. Dell’Oste, C. A. Bertelloni,
A. Fiorillo, and L. Dell’Osso, “Risk and protective factors for
PTSD in caregivers of adult patients with severe medical
illnesses: a systematic review,” International Journal of En-
vironmental Research and Public Health, vol. 17.16, p. 5888,
2020.
[23] C. Frank, R. T. Brown, R. L. Blount, and V. Bunke, “Predictors
of affective responses of mothers and fathers of children with
cancer,” Psycho-Oncology, vol. 10.4, pp. 293–304, 2001.
[24] S. Ostrowski, J. A. Ciesla, T. J. Lee, L. Irish, N. C. Christopher,
and D. L. Delahanty, “e impact of caregiver distress on the
longitudinal development of child acute post-traumatic stress
disorder symptoms in pediatric injury victims,” Journal of
Pediatric Psychology, vol. 36.7, pp. 806–815, 2011.
[25] N. Nadig, N. G. Huff, C. E. Cox, and D. W. Ford, “Coping as a
multi-faceted construct: associations with psychological
outcomes among family members of mechanical ventilation
survivors,” Critical Care Medicine, vol. 44.9, pp. 1710–1717,
2016.
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... This article has been retracted by Hindawi following an investigation undertaken by the publisher [1]. This investigation has uncovered evidence of one or more of the following indicators of systematic manipulation of the publication process: ...
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