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Michelle_Michy
2-hdi.12526.pdf
Hemodialysis International 2017; 21:557–565
Original Article
Pediatrics
Psychosocial aspects of children and
families treated with hemodialysis
Anna MEDYN, SKA,1 Danuta ZWOLIN, SKA,1 Ryszard GRENDA,2
Monika MIKLASZEWSKA,3 Maria SZCZEPAN, SKA,4 Agnieszka URZYKOWSKA,2 Katarzyna ZACHWIEJA,3 Katarzyna KILIS,-PSTRUSIN, SKA1
1
Department of Pediatric Nephrology, Wroclaw Medical University, Wroclaw, Poland; 2
Department of
Nephrology, Kidney Transplantation and Hypertension, Children’s Memorial Health Institute, Warsaw,
Poland; 3
Polish-American Children’s Hospital, Jagiellonian University, Krakow, Poland; 4
Clinic of
Pediatrics, Nephrology and Endocrinology, Silesian Medical University, Zabrze, Poland
Abstract
Introduction: The aim of this study was to analyze the selected psychosocial aspects of chronic
kidney disease in children treated with hemodialysis (HD).
Methods: The study included 25 children treated with HD aged 2 to 18 years and their parents. Data
concerning the illness and socio-demographic parameters was collected. We used the Paediatric Quali-
ty of Life Inventory (PedsQL) for patients and for their parents the PedsQL-proxy version, General
Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and the Caregivers Burden Scale
(CBS) to evaluate health-related quality of life (QoL) of HD children and their primary caregivers.
Findings: In the PedsQL test, the QoL of HD children was lower than in healthy children. Children
treated with HD assessed their QoL on the PedsQL questionnaire higher than the primary care-
givers, on all subscales as well as an overall health-related QoL. Scoring below 2 on the GHQ-12
test was reported in 56% of mothers, which may indicate that psychological symptoms have inten-
sified. There was no correlation between BSSS, CBS, and GHQ-12.
Discussion: The assessment of QoL in pediatric patients would allow for the earliest possible
identification of their nonsomatic problems and irregularities. This could, consequently, contribute
to improving QoL in both children with chronic kidney disease and their families.
Key words: Children, hemodialysis, quality of life, parents’ perceived burdens
Correspondence to: A. Medyn,ska, MD, PhD, Department of Pediatric Nephrology, Wroclaw Medical University, Ul. Borowska 213; 50-556 Wrocław, Poland. E-mail: anna.
Conflict of Interest: The authors declare that they have no con- flict of interest.
Disclosure of grants or other funding: None Ethical approval: All procedures performed in studies involv-
ing human participants were in accordance with the ethical
standards of the institutional and/or national research com-
mittee and with the 1964 Helsinki declaration and its later
amendments or comparable ethical standards.
Informed consent: Informed consent was obtained from all
individual participants included in the study.
VC 2017 International Society for Hemodialysis DOI:10.1111/hdi.12526
INTRODUCTION
Today, owing to advances in the area of dialysis treatment
as well as in other medical procedures, children with
chronic kidney disease (CKD) have a significantly longer
survival rate. However, despite being provided with an
increasingly effective treatment, they can never be cured,
notwithstanding successful kidney transplantation.1 Con-
sequently, proper care over pediatric patients with CKD
must combine both medical and psychosocial aspects.
Already in 1994, Kurtin et al. stated that treating children
with CKD cannot be successful if it is narrowed only to
improving the mortality and/or comorbid conditions of
557
Medyn,ska et al.
558 Hemodialysis International 2017; 21:557–565
the disease.2 According to these authors, physical devel-
opment and achieving the same or similar general condi-
tion as healthy peers (with regard to school life, contacts
with peers, hobbies, and so forth.) should be also taken
into consideration.
Every chronic disease changes family functioning. It
increases stress levels and burdens the family members.
Moreover, it may influence family relationships. Besides,
being diagnosed with a chronic disease greatly increases
children’s dependency on parents/caregivers. As a conse-
quence, caregivers (usually mothers), face new problems
associated with caring for an ill child.
The chosen method of renal replacement therapy (RRT)
impacts both patients’ and their family’s quality of life
(QoL). Watson et al. reported that 34% of children began
RRT from HD or hemodiafiltration, and HD constitutes the
main therapeutic option for children aged 10–18 years.3
Schipper recognizes health-related quality of life
(HRQoL) as effects of chronic disease and its treatment
perceived by patients. This feeling is always subjective
and therefore difficult to assess. A study conducted in the
United States among 2500 children with chronic diseases
showed that patients with ESRD had significantly worse
HRQoL scores compared to children with other diseases.4
Polish studies proved that school-aged children with
chronic diseases assess their QoL remarkably worse com-
pared to healthy peers.5
QoL in HD patients has been assessed many times
before, but mainly in adults. QoL in children treated with
repeated hemodialysis has been assessed only in individual
studies. According to Glazebrook et al., 20% of CKD chil-
dren have a probable psychiatric disorder.6 Kogan et al.
reported that 30% of patients with CKD aged 9–18 years
fulfill the criteria for depression.7 The results published so
far do not allow for formulating recommendations regard-
ing psychological effects on HD patients and their families.
The assessment of QoL in pediatric patients would
allow identifying nonsomatic problems and irregularities
as soon as possible, which could contribute to improving
QoL in CKD pediatric patients and their families. Con-
cerning above mentioned remarks, we have conducted a
multicenter national study evaluating HRQoL in pediatric
patients treated with repeated HD and their families. Such
study has never been carried out in the Polish population.
MATERIAL AND METHODS
Eleven out of 12 pediatric dialysis centers in Poland par-
ticipated in the cross-sectional national study. The study
was conducted on HD children and their parent-proxies
between September 2011 and January 2012. The study
protocol adhered to the Declaration of Helsinki. The study
was approved by the Ethics Committee of Wroclaw
Medical University prior to study initiation. We obtained
written informed consent from all patients over 16 years
of age and all parents of all participants before their
enrollment in the study. Verbal consent was obtained from
patients under 16 years of age where possible.
The inclusion criteria for children were as follows: CKD
diagnosed at least 12 months prior to the study, HD treat-
ment at least 3 months prior to the study, age 2 or older, and
informed consent. All dialysis patients were without acute
illnesses and in stable psychophysical condition at the time
of the study. Patients with known history of severe to
profound mental retardation, renal, other solid-organ, bone
marrow, or stem cell transplantation, cancer/leukemia
diagnosis, and hospitalization within 14 last days (exclud-
ing hospitalization due to HD because of other reasons than
HD session), a significant life event unrelated to their
kidney disease in the past 30 days, such as losing a family
member were excluded.
Methods
Medical files were analyzed to obtain the following data:
primary diagnosis of kidney disease, patient’s age at the
time of CKD diagnosis, duration of illness, HD duration,
duration of nephrology care, additional non-renal comor-
bidities, place of living and its distance from a nephrologi-
cal center, and family history. Additionally, school-age
children and their parents were asked about schooling
level and special education requirements (supplementary
tutoring or an individualized education program). Then,
both parents were invited to fill out questionnaires
regarding changes in their families after the child’s CKD
diagnosis and their relationship with the people in their
immediate surroundings. The questionnaires were com-
pleted on a visit to the renal center and each parent filled
out the questionnaire individually.
In the next step, we used Paediatric Quality of Life
Inventory (PedsQL) 4.0 Generic Core Scales.8,9 We
obtained the user agreement from Mapy Research Insti-
tute in Lyon, France. In addition, the parents underwent
the following tests: the 12-item General Health Question-
naire (GHQ-12),10 Berlin Social Support Scales
(BSSS),11,12 and the Caregiver’s Burden Scale (CBS).13 All
tests were translated and validated in Poland.14–16 Cron-
bach‘s a for GHQ-12 is 0.72 and for the four subscales of
BSSS ranges from 0.70 to 0.86. Cronbach‘s a is 0.88 for
the total scale of CBS and ranges from 0.74 to 0.82 for the
subscales. The tests used in the study were thoroughly
presented in our other work.17 All tests were designed
Children in hemodialysis
559 Hemodialysis International 2017; 21:557–565
Gender
(or home-classes) median (quartiles)
HD 5 hemodialysis; CKD 5 chronic kidney disease. aIn the past 6 months.
according to the general protocol and administration
guidelines.
Statistical analyses
Statistical analyses were performed using R for Windows,
version 2.15.1 (The R Foundation for Statistical Comput-
ing, Vienna, Austria) and MedCalc for Windows, version
12.3.1.0 (MedCalc Software, Mariakerke, Belgium).
Medians, quartiles, frequencies and percentages were
reported to describe the data, as appropriate. Qualitative
analyses were conducted using a chi-square test or Fish-
er’s exact test. Quantitative variables were tested for nor-
mality distribution by a Kolmogorov–Smirnov test. For
comparison between groups, the Mann–Whitney test and
the Kruskal–Wallis test were used, as appropriate.
Spearman’s correlation analysis was used to determine the
correlation between parameters. A P value of less than
0.05 was considered statistically significant.
RESULTS
The analysis included test results received from 25 children
treated with repeated HD and 25 mothers—patients’ prima-
ry caregivers. The study did not include test results gathered
from fathers/patients’ second caregivers because of insuffi-
cient sample size (only 6 fathers submitted filled tests).
Survey results
The characteristics of the studied group of patients are
presented in Table 1. All patients, except for 3 children
Table 1 Basic characteristic of hemodialysis children
Parameter n 5 25 %
Age, mean 6 SD, years 13.15 6 4.58
Children< 5 3 12 5 22 88
Female 15 60.0
Male 10 40.0
Cause of CKD
Chronic glomerulonephritis 2 8
Anomaly of kidney and urinary tract and chronic pyelonephritis 11 44
Hereditary kidney disease 2 8
Others 9 36 Unknown cause 1 4
Comorbidity
Yes 3 12
No 22 88
Family renal history
Yes 2 8
No 23 92
Place of residence (size)
Village or town < 50,000 residents 19 76 Town 50,000 – 100,000 residents 0 0
Town > 100,000 residents 6 14 Age at CKD diagnosis, median (quartiles), years 4.0 (1–10) CKD duration, median (quartiles), years 7.5 (3.0–13.84) Nephrological care duration, median (quartiles), years 6.04 (2.25–11.5) HD therapy, median (quartiles), years 4 (3.75–4.0) Distance from nephrology centre, median (quartiles), km Number of hospitalizationsa median (quartiles)
59.0 (28.75–72.5)
2 (1–4)
The number of missed school-days in the past 6 months 8 (8–32)
Medyn,ska et al.
560 Hemodialysis International 2017; 21:557–565
Table 2 Basic characteristics of parents and families of
hemodialysis children
Parameter n %
Mothers 25 100
Age, mean 6 SD, years 37.96 6 6.74 Mother's education level
Elementary/trade school 16 64
High school 6 24
University degree 3 12
Employment
diagnosis according to patients’ mothers are presented in
Table 3. In the majority of families (52%), the financial
situation has changed; in 44% of cases the situation got
worse. Besides, in 44% of cases mothers declared deterio-
ration of their social contacts.
Test results
The results of PedsQL were lower in the group of HD
children compared to healthy children described in the
literature, both in terms of overall HRQoL (50.54 6 7.82
vs. 82.87 6 13.6) and in individual domains: physical
Table 3 Changes in the family observed by the mothers
after chronic kidney disease diagnosis in the child
Mothers’
evaluation
n 5 25
Yes No
Employment n % n %
Yes 20 80 Change of location of residence 1 4 24 96
No 5 20 Changes made to current residence 3 12 22 88 Healthy Change in financial status 13 52 12 48
Yes 23 92 Deterioration 11 44
No 2 8 Improvement 2 8
Family
Full
19
76 The change of the source of income
Caring for the child
5 20 20 80
Single-parent family 6 24 Mother 19
Sibling Father 0
Yes 24 94 Both parents 6
No 1 4 Participation of other people 9 36 16 64 in child care
under the age of 5 years, were subjected to compulsory
schooling (22 patients—88%). The majority of patients
were home-schooled (15 children—68%), the remaining
children attended classes in school (7–32%). Nine pupils
(36%) required no help with their studying; the remain-
ing 16 children (64%) received assistance from their
parents.
The characteristics of HD patients’ families are pre-
sented in Table 2. Most children were brought up in full
families; only 6 patients had only one parent (a mother).
Almost all children had siblings, only one was an only
child.
The primary caregivers of patients were mothers (in 19
cases), and both parents (in 6 cases). In 9 cases (36%),
additional family members assisted with a care for a sick
child, and they were usually patients’ grandparents. Dif-
ferences that have occurred in families after disease
Changes in relations among children 4 16 21 84
Improvement 4 16
Deterioration 0 0
Changes in social contacts 11 44 14 56
Improvement 0 0
Deterioration 11 44
New friendship 12 48 13 52
Yes 8 32
No 17 68
Healthy
Yes 23 92
No 2 8 Fathers 25 100
Age (mean 6 SD), years 40.92 6 7.42
Father's education level Elementary/trade school 20 80
High school 2 8 University degree 3 12
Grandparents 7 28 Siblings 1 4
Cousins 1 4
Changes in attitude toward
the ill child
6 24 19 76
Improvement 6 24
Deterioration 0 0
Changes in attitude toward 2 8 23 92
other children
Improvement 1 4
Deterioration 1 4
Children in hemodialysis
561 Hemodialysis International 2017; 21:557–565
Table 4 PedsQL 4.0 generic core scales from child’s self-report (for ages 5–18; n 5 25) and parent-proxy report—primary
caregivers
HD children Primary caregivers of HD children
Characteristic n 5 25 n 5 25
Physical functioning 40.63 (18.75–65.63) 51.56 (20.31–68.75)
Emotional functioning 52.5 (35.0–75.0) 50.0 (37.5–65.0)
Social functioning 67.5 (50.0–80.0) 62.5 (45.0–85.0)
School functioning 47.5 (35.0–65.0) 40.0 (35.0–60.0)
Overall HRQoL 50.54 (40.22–64.13) 49.46 (40.22–62.5)
The data are presented as a median and quartiles (first–third quartile).
HD 5 hemodialysis; HRQoL 5 health-related quality of life.
functioning (40.63 6 6.46 vs. 86.86 6 13.88) emotional
functioning (52.5 6 10.42 vs. 78.21 6 18.64), social
functioning (67.5 6 11.46 vs. 84.04 6 17.43), school
functioning (47.5 6 9.46 vs. 79.92 6 16.93).8
The test results regarding the evaluation of QoL in HD
children by their primary caregivers were lower in all
domains compared to caregivers of healthy children
(physical functioning: 51.56 6 10.24 vs. 83.26 6 19.98,
emotional functioning: 50.0 6 9.83 vs. 80.28 6 16.99,
social functioning: 62.5 6 12.25 vs 82.15 6 20.08 and
school functioning: 40.0 6 9.36 vs 76.91 6 20.08) and
overall (49.46 6 9.46 vs. 81.34 6 15.92). Functioning in
the physical domain was assessed higher by caregivers
than by children, but in other domains the caregivers’
evaluation of QoL was lower than children’s assessment.
The results of PedsQL tests in HD children and their pri-
mary caregivers are presented in Table 4.
The results of CBS, BSSS, and GHQ-12 tests received
from HD children’s primary caregivers are presented in Table
5. The overall level of burden on the CBS scale was
2.39 (1.77–2.57) that means “medium burden.” On the sub-
scales we noted low levels regarding the emotional involve-
ment and the environment, whereas the other parameters
were medium. The highest score was reported on the sub-
scale “disappointment.” The average value equaled 2.6, but
such result does not indicate high levels of burden.
The level of social support assessed by primary care-
givers varied from 2.78 to 3.5 on individual scales. The
lowest scoring concerned “the need for support” and the
highest “perceived available information support”—3.75.
In the GHQ-12 test the average score was 3. The higher
values indicated more psychological symptoms. Score
above 2 points, which indicated the possible occurrence
education, professional career, the family structure (com-
plete/single parent), having or not having other children,
and the source of income (professional career vs. welfare
benefits). There was no correlation between scoring on all
scales and the hometown population size, and between
CBS results and CKD duration.
A statistically significant negative correlation was found
between PedsQL parent-proxy (overall HRQoL) and CBS:
total burden index, environment, disappointment and
general strain (r 5 20.55, P 5 0.006; r 5 20.74,
P < 0.001; r 5 20.42, P 5 0.045; r 5 20.45, P 5 0.03,
Table 5 Berlin Social Support Scale, Caregiver Burden
Scale, and General Health Questionnaire test results
among the mothers (primary caregivers) of hemodialysis
children
Berlin Social Support Scale (BSSS)
Perceived available support:
Emotional 3.50 (2.63–4.00)
Instrumental 3.75 (2.88–3.75)
Need for support 2.78 (2.50–3.25)
Support seeking 2.90 (2.40–3.38)
Actually received support:
Emotional 2.80 (2.60–3.00)
Informational 3.20 (2.70–3.40)
Instrumental 3.60 (3.00–4.00)
Caregiver Burden Scale (CBS)
General strain 2.38 (1.88–2.69)
Social isolation 2.17 (1.33–3.00)
Disappointment 2.6 (2.3–2.9)
Emotional involvement 1.67 (1.33–2.17)
Environment 1.67 (1.5–2.25)
Total burden index 2.39 (1.77–2.57)
of abnormal mental functioning, was observed in 14
(56%) of mothers.
General Health Questionnaire (GHQ-12)
3 (2–5)
There was no significant correlation between BSSS,
CBS and GHQ-12 results and the parents’ age, their
The data are presented as a median and quartiles (first–third
quartile).
Medyn,ska et al.
562 Hemodialysis International 2017; 21:557–565
respectively). Positive correlation between BSSS subscale:
perceived available emotional support and PedsQL
parent-proxy were observed (emotional functioning r
5 0.46, P 5 0.03 and social functioning r 5 0.52, P
5 0.01). We did not note any correlation between
GHO-12 and PedsQL parent-proxy.
DISCUSSION
Our research comprehensively assessed the psychosocial
situation of HD pediatric patients. The HRQoL was
assessed both by HD children and by their parents. More-
over, we studied selected aspects of parents’ psycho-social
functioning when facing child’s illness.
The studies that evaluate QoL in children undergoing
RRT are relatively few and they usually involve small
groups of patients treated with various methods. In the
available literature, QoL was compared in CKD children
on different stages (predialysis vs. RRT) or undergoing
various methods of RRT (HD, peritoneal dialysis-PD,
transplantation-Tx).18–26 In some of the above-mentioned
studies the authors analyzed QoL in children on dialysis
(both PD and HD), whereas the type of dialysis also influ-
ences QoL.27,28 The available literature lacks a study car-
ried out both on children undergoing repeated
hemodialysis and on their caregivers.
We have demonstrated that HD children assessed their
HRQoL (in the overall assessment and in all QoL
domains) worse than general population of healthy chil-
dren. In our study the patients provided the lowest scores
on the subscale “physical functioning,” which can be
associated with the fact that both disease itself and the
therapy lead to numerous changes in children’s appear-
ance. The patients’ appearances such as short height or
bone deformities, which appear most of all during the
puberty period, are a significant element of self-
acceptance. Riano-Galan et al. reported that patients’
height itself constitutes an independent indicator of
health-related satisfaction.25
We also received very low results on the subscale
“school functioning” which may partly result from the
method of treatment itself. Transportations and many
hours in hospitals make difficult or even impossible to
integrate with school peers. Transportation and many
hours spending in hospital may be the reasons for leaving
lessons and learning difficulties. Another factor contribut-
ing to the scoring on the subscale “school functioning”
may be a due to disorders associated with the impact of
HD on the patients’ central nervous system (declines in
blood pressure, anemia, and disturbances in acid-base and
calcium-phosphate balances). Our patients provided
the highest scores on the subscale “social functioning,”
although the scoring was lower than in healthy children.
The above results may be connected with the use of
defense mechanisms or with narrow the perceived group
of peers only to the closest environment.
Similarly to our study, Goldstein et al. reported that
children with ESRD (among them 32 HD children) pre-
sent a significantly lower HRQoL compared to healthy
peers both in the overall scoring and on all subscales.26
Lopes et al., having adopted the same research instru-
ment, presented comparable results. Dialysis patients
(including 25 children, 12 of them treated with HD)
assessed their QoL lower in the physical, social, and
school functioning domains compared to healthy peers.19
Moreover, other researchers having adopted different
research instruments, reported lower QoL compared to
the control group.18,22,23,25 Heath et al. presented differ-
ent results. They reported that children with CKD (n
5 124, including 8 children with HD) have significant- ly
higher QoL than the general population.21 Maxwell et
al. reported that children with CKD have significantly
higher QoL compared to healthy population, but it partic-
ularly concerned males.20 The authors suggest that HD
children “live with the disease” and have lower life
expectations since they accept their reality as it is. Both parents and children assess the same situation
according to individual standards. In our study, the pri-
mary caregivers assessed QoL of their children lower on
all subscales and overall compared to the healthy group
described in the literature, which is in accordance with
many other authors’ reports.22,24 The diagnosis of chronic
disease in child significantly changes caregivers assess-
ment of children’s lives and possibilities. Our study
showed that primary caregivers assessed QoL lower than
children in overall and on all subscales without regarding
physical functioning. Similar results were also presented
by other researchers such as Goldstein et al., Park et al.,
and McKenna et al., who emphasized this fact particularly
clearly in children on dialyses.22,24,26 Such an attitude may
consequently lead to a situation in which parents become
“over-protective,” children are not self-reliant, but they
dependent on their caregivers. On the other hand, Lopes
et al. presented different results.19 According to these
authors, primary caregivers assessed QoL higher than
patients in all areas except for school functioning. The
discrepancy between patients and caregivers was sig-
nificantly higher than in the control group (a child—a
parent). The older the child, the differences in assessing
QoL were higher. Such discrepancies may lead, particu-
larly during the adolescence, when a need to become
Children in hemodialysis
563 Hemodialysis International 2017; 21:557–565
independent is strong, to isolation, psychological imbal-
ances and, consequently, to noncompliance.
It should be emphasized that children with ESRD and
their parents present similar HRQoL as children with
newly-diagnosed cancer and those undergoing chemo-
therapy and radiotherapy treatments.29 Therefore, it must
be concluded that having a child with CKD in a family is
a very difficult experience, not always sufficiently
acknowledged both by the medical personnel and by the
surrounding environment. What is more, it suggests that
there is a need of monitoring and providing such patients
with ongoing psychological care.
The socio-economic situation of Polish families with
children treated with repeated HD appears to be difficult.
In the examined families, 68% of mothers did not work.
We associated this primarily with the fact that mothers
devoted their time to care over ill children, transporting
them to dialysis center as well as subsequent, several-
hour stays in hospital during the treatment itself. In Poland
commuting to nephrology centers is troublesome since
transportation, due to financial reasons, cannot be
individualized, and it often involves travelling long distan-
ces, which is very time-consuming. Besides, 20% of our
patients’ fathers were unemployed. Following the disease
diagnosis, 52% of mothers observed that the financial sit-
uation of their families had deteriorated. According to the
data from the Polish Central Statistical Office (2013), chil-
dren with chronic illnesses constitute only 5.5% of all
children that receive social assistance. Marciano et al.
observed that a difficult socio-economic situation in fami-
lies with children with CKD was not correlated with low-
er HRQoL.18 Adversely, von Rueded et al. stated that low
economic status may lower HRQoL.30 In our study, we did
not directly study the relationship between the above-
mentioned factors, but taking into consideration the
reported decline in the economic situation, it can be stat-
ed that this tendency seems highly probable.
All children subject to compulsory schooling participat-
ed in classes. In our study the vast majority of children (15
children, i.e., 68%) were home-schooled. Buyan et al.
reported that 50% of dialyzed children (including HD and
PD) leave school.23 In the American study, 53% of
children were able to successfully achieve full-time school
attendance.31 School prepares children for adult life,
allows their independence from parents and serves as a
best indicator of socializing children with chronic ill-
ness.32 Therefore, it is especially essential for HD children
to ensure their optimal educational opportunities suited to
the RRT.
The present study demonstrated that according to CB
scale, the overall burden of primary caregivers was at the
medium level. Therefore, contrary to the expected results,
it was not high. Perhaps being primary caregivers leads to
the satisfaction with the care they can provide. We
recorded the highest values of burden on the subscale
“disappointment.” This may result from the fact that
mothers, because of relentless care they provide, had
abandoned their own plans and dedicated themselves to
the ill child. We also observed an excessive burden on the
subscale “the overall effort,” which probably resulted
from the physical and mental fatigue and from the sense
of responsibility for an ill child. This seems even more sig-
nificant in view of the fact that only 1/3 of mothers/care-
givers stated that they receive help from other people so
that they are most exposed to an excessive burden.
The GHQ-12 can determine mental health, experienced
distress, and identify people who are likely to develop
mental health problems. In our study, more than half of
the patients’ mothers received the score above 2. This
result may prove the possible occurrence of abnormal
mental functioning. Therefore, each caregiver must be
provided with an adequate support and be taught how to
deal with stress.
Social support plays an important role in the process of
accepting a new situation which is caring for a child with
CKD. In the present study, we applied BSSS in order to
assess this support. According to the theory by H. SeR k,
social support constitutes “a form of a social interaction,”
in which we exchange information (information support),
instruments of action (instrumental support), material
goods (material support), and emotions (emotional sup-
port). In current study, we have shown that caregivers
perceived instrumental support more often than the emo-
tional one. Although family is believed to be one of the
main sources of support, caregivers of children with CKD
are left without enough emotional support from their loved
ones. The mothers/caregivers are faced with daily
problems alone. At the same time, our study showed that
perceived received support is higher than the need for it.
Our results show that mothers inconsistently assess their
own life situation, because even if they know that the sup-
port is “available,” they do not aim for it. Whereas, social
support reduces fatigue.33
Our study had many limitations. First of all, the group
of patients was small, but, on the other hand, it included
all Polish children treated at the same time with hemodi-
alysis as well as their primary caregivers. We examined
only one caregiver, which proves that fathers find it diffi-
cult to accept a child with CKD in the family. It also draws
attention to the fact that alone caregivers may develop
mental health problems. According to some esti- mation,
in western countries 20% of children under 16
Medyn,ska et al.
564 Hemodialysis International 2017; 21:557–565
years of age suffer from chronic diseases.34 These chil-
dren, compared to peers, will be delayed in all areas of
autonomy, as well as in the psycho-sexual and social
development.35 In Poland, the percentage of school-aged
teenagers and children diagnosed with chronic diseases
varies between 20% and 30%.36 This is an aggravating
factor for both a child’s body and mind, and may contrib-
ute to developing emotional and behavioral disorders.
Therefore, assessing HRQoL of children with CKD
becomes a daily medical necessity which aids proper
development of majority of these children and their regu-
lar/normal entry into “adulthood.”
CONCLUSIONS
We need to undertake actions that improve QoL in HD
children. Mothers of HD children, that is, their primary
caregivers, have a high risk of developing psychiatric dis-
orders which indicates the need of providing them with
psychological help.
Manuscript received July 2016; revised November 2016.
REFERENCES
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2 Kurtin PS, Landgraf JM, Abetz L. Patient-based health status measurements in pediatric dialysis: Expanding the
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