I have a research plan and 5 references, and you can add one or two references. Academic writing is general.

Pediatr Nephrol (2013) 28:2157–2167

DOI 10.1007/s00467-013-2532-6

Psychosocial aspects of children and families of children treated with automated peritoneal dialysis

Katarzyna Kiliś-Pstrusińska & Anna Wasilewska & Anna Medyńska &

Irena Bałasz-Chmielewska & Ryszard Grenda & Agnieszka Kluska-Jóźwiak &

Beata Leszczyńska & Ilona Olszak-Szot & Monika Miklaszewska & Maria Szczepańska &

Marcin Tkaczyk & Agnieszka Tkaczyk & Katarzyna Zachwieja & Maria Zajączkowska & Helena

Ziółkowska & Ilona Zagożdżon & Danuta Zwolińska

Received: 28 January 2013 / Revised: 21 May 2013 / Accepted: 31 May 2013 / Published online: 16 August 2013 # The Author(s) 2013. This article is published with open access at Springerlink.com

Abstract Background The aim of this study was to analyze psycho-

social aspects of chronic kidney disease (CKD) in children

treated with automated peritoneal dialysis (APD).

Methods The study assessed 41 children > 2 (range 2.1–18)

years of age and their parents. Data concerning the illness

and sociodemographic parameters were collected. Patients

completed the Paediatric Quality of Life Inventory (PedsQL)

and their parents the PedsQL-proxy version, General Health

Questionnaire (GHQ-12), Berlin Social Support Scales

(BSSS), and Caregiver’s Burden Scale (CBS).

Results Parents rated their children’s overall health-related

quality of life (QoL) as well as their physical and emotional

functioning lower than the patients themselves. The majority

of primary caregivers had a medium level of the total burden

index in the CBS and higher values in the scales need for

support and perceived available support than in the received

support (BSSS). In the GHQ-12, 51.2 % of primary care-

givers had scores >2 points, which indicated the possible

occurrence of abnormal mental functioning. Conclusions Financial support for patients’ families is nec-

essary. Parents who provide primary care to children on PD

require, above all, emotional support and assistance in self-

fulfilment. More than half of them may have impaired men-

tal function. There is the strong need to provide continuous

psychological care for caregivers. Differences in perception

K. Kiliś-Pstrusińska (*) : A. Medyńska : D. Zwolińska Department of Paediatric Nephrology, Wrocław Medical

University, ul. Borowska 213, 50-556 Wrocław, Poland e-mail: [email protected]

A. Wasilewska

Department of Paediatrics and Nephrology,

Medical University of Białystok, Białystok, Poland

I. Bałasz-Chmielewska : I. Zagożdżon Department of Paediatric & Adolescent Nephrology &

Hypertension, Medical University of Gdansk, Gdansk, Poland

R. Grenda : A. Urzykowska Department of Nephrology, Kidney Transplantation and

Hypertension, Children’s Memorial Health Institute,

Warsaw, Poland

A. Kluska-Jóźwiak Department of Paediatric Cardiology and Nephrology,

Poznan University of Medical Sciences, Poznan, Poland

B. Leszczyńska : H. Ziółkowska Department of Paediatrics and Nephrology,

Medical University of Warsaw, Warsaw, Poland

I. Olszak-Szot

Department of Nephrology, Children Hospital, Toruń, Poland

M. Miklaszewska : K. Zachwieja Polish-American Children’s Hospital, Jagiellonian University,

Krakow, Poland

M. Szczepańska

Clinic of Paediatrics, Nephrology and Endocrinology,

Silesian Medical University, Zabrze, Poland

M. Tkaczyk

Nephrology Division, Polish Mothers’ Memorial Hospital

Research Institute, Łodź, Poland

M. Zajączkowska Department of Paediatric Nephrology, Medical University

of Lublin, Lublin, Poland

ORIGINAL ARTICLE

2158 Pediatr Nephrol (2013) 28:2157–2167

of the children’s activity in varied areas by the patients

themselves and their caregivers may contribute to further

problems within families.

Keywords Children . Peritoneal dialysis . Health-related

quality of life . Parents’ perceived burdens . Primary

caregivers

Introduction

Home peritoneal dialysis (PD) is the preferred chronic dialysis

modality for children with end-stage renal disease (ESRD) [1].

Thanks to technological advances, inter alia, various PD

regimens and solutions, as well as clinical experience, patient

survival and somatic condition has improved [1, 2]. Never-

theless, impaired health-related quality of life (HRQoL)

among patients on dialysis remains a challenge [3]. Patient’s

QoL is closely related to the family, especially when the

patient is on PD. In addition to the typical parental responsi-

bilities and activities of providing support, parents must also

be engaged in the therapeutic process [4, 5]. In many cases,

the home environment is medicalized, with family members

becoming the main caregivers burdened with many responsi-

bilities related to PD and thus affects the life of the patient’s

family. On the other hand, each parent’s perception of their

psychosocial situation, as well as their reaction to it, may

affect the relationship between parents and their children and

the child’s functioning [6, 7].

Before the decision concerning renal replacement treatment

(RRT) is made, it is necessary to assess the family’s social,

psychological, and economic background and recognize the

needs of parents/caregivers [2, 8]. Disregarding those factors

creates the risk of complicating the method. Thus far, psycho-

social aspects of children with chronic kidney disease (CKD)

treated with automated peritoneal dialysis (APD) have rarely

been analyzed, and never in Poland. Therefore, we conducted a

multicenter national study with the aim of analyzing the

psychosocial situation in families of children treated with

APD. We gave particular attention to parents’ perceived

burdens. We considered children’s HRQoL as perceived by

themselves and as by their parents, because perceiving the

QoL of sick children is one element of assessing the family

situation. Another aim was to determine in which areas of

everyday life the families of children treated with APD require

support.

Methods

Eleven of 12 pediatric dialysis centers in Poland participated

in the cross-sectional national study. The research was

conducted on children with ESRD treated with APD and their

parent–proxies between September and December 2011. The

study protocol adhered to the Declaration of Helsinki and was

approved by the Ethics Committee of Wrocław Medical

University. Written informed consent was obtained from all

participants >16 years of age and all parents before enrollment

in the study. Verbal consent was obtained from patients <16 years

where possible. Inclusion criteria for children were as follows:

1. CKD diagnosed at least 12 months prior to the study, 2. PD beginning at least 3 months prior to the study,

3. age ≥2 years, and 4. informed consent.

Exclusion criteria for children comprised:

1. a history of severe to profound mental retardation,

2. renal, other solid-organ, bone marrow, or stem cell

transplantation,

3. cancer/leukemia diagnosis,

4. hospitalization within 14 days (excluding hospitalization

due to peritoneal dialysis control visit), and

5. a significant life event unrelated to their kidney disease

in the past 30 days, such as losing a family member.

In Poland, there is a common treatment protocol for

managing children on APD, with PD nurses who meet the

families predialysis. The nurses work in a dialysis center.

Home visits prior to dialysis are done by district nurses who

also do the follow-up visits. The district nurses are in constant

contact with the PD nurses. The PD family has access to

district social workers and psychologists.

Medical files were analyzed to obtain the following data:

primary diagnosis of kidney disease, patient’s age at time of

CKD diagnosis, illness duration, APD duration, nephrologic

care duration, additional nonrenal comorbidities, place of

living and distance from a nephrologic 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. Questionnaires were

completed on a visit to the renal center, and each parent

filled out the questionnaire separately.

In the next step, we used Pediatric Quality of Life Inventory

(PedsQL) 4.0 Generic Core Scales [9, 10]. We obtained the user

agreement from Christelle Berne, Mapy Research Institute in

Lyon, France. In addition, parents underwent the following test

studies: the 12-item General Health Questionnaire (GHQ-12)

[11], Berlin Social Support Scales (BSSS) [12, 13], and the

Caregiver’s Burden Scale (CBS) [14]. All tests were translated

and validated in Poland [15–17]. Cronbach’s α for GHQ-12 is

0.72 and for the four subscales of BSSS ranges from 0.70 to

Pediatr Nephrol (2013) 28:2157–2167 2159

0.86. Cronbach’s α is 0.88 for the total scale of CBS and ranges

from 0.74 to 0.82 for the subscales.

The PedsQL assesses physical, emotional, social, and

school functioning in children and adolescents. The mea-

sure comprises a report from children 5–18 years of age and

a parent report for children between 2 and 18 years of age

regarding the child’s HRQoL. The PedsQL 4.0 Ge- neric

Core Scales were specifically designed to measure the core

health dimensions outlined by the World Health

Organization.

The GHQ-12 measures psychological distress and is used

to detect nonpsychotic psychiatric disorders such as depres-

sion or anxiety in adults [11]. The scale asks whether the

respondent has experienced a particular symptom or behav-

ior recently. Each item is rated on a four-point scale (less than

usual, no more than usual, rather more than usual, or much

more than usual). The GHQ-12 is brief, easy to complete,

and its application in research settings as a screening tool is

well documented. We used the original scoring method in

our study (response categories score: 0, 0, 1, and 1, respec-

tively). This produces scores ranging from 0 to 12; the higher

values indicate more psychological symptoms.

The original BSSS includes six independent subscales

(perceived available support, need for support, support seek-

ing, actual received support, provided support, and protective

buffering) and measures both the cognitive and behavioral

aspects of social support [12, 13]. With the authors’ consent,

four subscales were used for this study: perceived available

support (8 items), need for support (4 items), support seeking

(5 items), and actual received support (15 items). The per-

ceived support subscale comprises items of emotional and

instrumental support; the overall received support includes

items of emotional, instrumental, and informational support.

The response format is the same for all subscales. Individuals

rate their agreement with the statements on a four-point scale

[strongly disagree (1), somewhat disagree (2), somewhat

agree (3), and strongly agree (4)]. An average mean within

the range of 1–4 was calculated for each subscale. A higher

score indicated greater burden.

The CBS uses 22 items to assess the subjective burden of

caregivers to chronically ill individuals [14]. All items are

scored between 1 and 4 (not at all, seldom, sometimes, often)

and cover areas such as the caregiver’s health, feeling of

psychological well-being, relationships, social network,

physical workload, and environmental aspects that might

prove important. The scale was divided into five indices:

general strain (8 items), socialization (3 items), disappoint-

ment (5 items), emotional involvement (3 items), and envi-

ronment (3 items). The total burden index is the mean of all

22 items. The higher the score, the greater the burden. The

overall mean of a caregiver’s burden score was defined as

low burden (1.00–1.99), medium burden (2.00–2.99), and

high burden (3.00–4.00) [14].

All tests were designed 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 Computing,

Vienna, Austria) and MedCalc for Windows, version 12.3.1.0

(MedCalc Software, Mariakerke, Belgium). Medians,

quartiles, frequencies, and percentages were reported to

describe data, as appropriate. Qualitative analyses were

conducted using a chi-squared test or Fisher’s exact test.

Quantitative variables were tested for normality distribution

by a Kolmogorov–Smirnov test. For comparison between

groups, the Mann–Whitney and Kruskal–Wallis tests were

used, as appropriate. Spearman’s correlation analysis was

used to determine the correlation between parameters. A

p value <0.05 was considered statistically significant.

Results

Taking into consideration inclusion and exclusion criteria,

except for parents’ consent, 50 children were qualified for

inclusion in the study/examination. Final studies were

conducted among 41 children with APD whose parents gave

their consent. Among the 82 parents and/or their guardians

(all Polish), data from 40 mothers (one mother maintains no

contact with her sick child) and 39 fathers were analyzed.

Four fathers do not live with their families, but two mothers

provided the fathers’ information. In subsequent parts of the

analysis, only the results of fully completed surveys were

taken into consideration.

Survey results

Characteristics of the examined children are presented in

Table 1. All children at their compulsory school age (> 5

years, n =30) carried on their education. Thirteen children

(44.8 %) went to school (including two attending special

schools); 16 patients were home-schooled (55.2 %). One

child did not provide information with regard to the type of

learning. Eleven pupils (37.93 %) required no help with their

studying; the remaining 18 children (62.07 %) received

assistance from their parents. The number of school days (or

lesson days at home) missed in the previous 6 months was

(median, quartiles) 10 (0–30).

The characteristics of APD children’s families, their par-

ents in particular, are presented in Table 2. Most children

were growing up in complete families; only five of them

lived with one parent (four with the mother and one with the

father). Thirty children had siblings (26 of them one or two;

four had three to six). Family household incomes come from

2160 Pediatr Nephrol (2013) 28:2157–2167

Table 1 Basic characteristics of automated peritoneal dialysis

(APD) children

Parameter Number= 41 Percentage

Age, mean ± SD, (years) 9.24± 5.09

Children <5 10 24.4

≥ 5 31 75.6

Gender

Female 14 34.15 Male 27 65.85

Cause of CKD

Chronic glomerulonephritis 13 31.71

Anomaly of kidney and urinary tract and chronic pyelonephritis 15 35.58

Hereditary kidney disease 9 21.95

Others 3 7.32

Unknown cause 1 2.44

Comorbidity

Yes 6 14.6

No 35 85.4

Family renal history

Yes 4 9.76

No 37 90.14

Place of residence (size)

Village or town <50,000 residents 27 65.85

Town 50,000–100,000 residents 3 7.32

Town > 100,000 residents 11 26.83

Age (years) at CKD diagnosis, median (quartiles), 1.5 (0.02–6.0)

CKD duration (years), median (quartiles) 4.17 (2.21–8.15)

Nephrological care duration (years), median (quartiles) 4.0 (2.25–8.18)

PD therapy (years), median (quartiles) 1.98 (0.71–2.25)

PD peritoneal dialysis; CKD Distance from nephrology center (km), median (quartiles) 65.0 (21.5–102.5)

chronic kidney disease Number of hospitalizationsa, median (quartiles) 6.0 (3.0–6.0)

a In the previous 6 months

various sources but mostly from professional careers, indi-

cated by 82.5 % of parents (multiple choice options). Other

sources of income included annuity and/or pension, which

were indicated by 15 % of parents, and social welfare in 47 %

of respondents. Parents’ perceived change in their families’

situation after the child’s CKD diagnosis is summarized in

Table 3. No statistically significant differences were found

with respect to the parents’ gender.

Use of social welfare and unemployment, and deterioration

in financial situation in parents’ evaluation (Tables 2 and 3)

showed a harsh economic situation for the family.

Each parent was asked to evaluate their relationships with

the people in their immediate surroundings and with medical

staff by assigning points from 1 (very bad) to 5 (very good).

Results are shown in Table 4. Differences between fathers’

and mothers’ assessments were not statistically significant.

In each family, parents indicated the sick child’s main care-

giver. The group of primary caregivers comprised 40

mothers and one father. Guardians (henceforth referred to as

primary caregivers) were asked to share their expectations

toward medical personnel. Twelve individuals (29.3 %)

described their expectations toward nurses. In addition to

general terms, such as “providing care” and “help”, attention

focused on the assistance provided during the hospital stay,

sharing more information regarding PD, greater

professionalism, and better contact with the child. With

respect to physicians, nine individuals (22 %) expected

“good care” and more detailed information about the

patient, mainly about the projected course of the disease

and their child’s future. Only 15 primary caregivers (36.59

%) asserted that their child’s kidney transplantation was

discussed.

Test results

The PedsQL test results in the entire group of parents who

provide primary care for APD children (n =41) were signif-

icantly lower in relation to results among parents of healthy

children published in the literature, both within the scope of

overall HRQoL (51.0 ±16.42 vs 81.34±15.92, p <0.01) and

Pediatr Nephrol (2013) 28:2157–2167 2161

Table 2 Basic characteristics of parents and families of children on automated peritoneal dialysis

PedsQL test results among children between 5 and 18 years of

age (n=31) and both parents. All primary guardians and 13

“secondary parents” completed the tests. Both parents rated

their children’s physical and emotional functioning as well as

their overall HRQoL as significantly lower than the sick

children did themselves. The patients rated their social func-

tioning higher than did their primary caregivers. No signifi-

cant differences were found in the evaluation of school func-

tioning between the studied groups. The intraclass cor-

relation coefficient (ICC) between primary parent and child

reports was calculated to be 0.74. The ICC between secondary

parent and child reports and between primary and secondary

parent reports were calculated to be 0.68 and 0.64,

respectively.

Parents’ test results are demonstrated in Table 6. There

were no significant differences within the scope of social

support (perceived available support, the need for such sup-

port, support seeking, and received support) between prima-

ry and secondary parents (BSSS results). The CB scale

demonstrated that the average total burden index in primary

caregivers was medium. Results obtained also correspond

with medium burden in the following subscales: general

strain, social isolation, and disappointment. Low levels of

burden were observed in the emotional involvement and

environment subscales. The results in the secondary parents

group indicate lower general strain than in primary guard-

ians; no significant differences were demonstrated with re-

spect to the remaining subscales; however, the average total

burden index (2.0) borders on low and medium burden.

GHQ-12 results in the group of primary caregivers were

significantly higher than in the group of secondary care-

givers. In addition, scores >2 points, which indicated the

possible occurrence of abnormal mental functioning, were

observed in 51.2 % of primary parents and in only 23.53 %

of parents who did not provide primary care. There was no

SD standard deviation

a One mother does not live with her child (no contact). b Four fathers do not

live with their families, but in the case of two fathers, the mothers provided

their information. c No information was provided for two fathers

in individual subscales: physical functioning (49.24±18.75 vs

83.26±19.98, p<0.01), emotional functioning (55.12±18.5 vs

80.28±16.99, p<0.01), social functioning (55.24±22.11 vs

82.15±20.08, p<0.01), and school functioning (55.7±28.93 vs

76.91±20.08, p<0.01) [9]. Similarly, PedsQL test results among

APD patients (5–18 years of age) were significantly lower sta-

tistically (p<0.01) than in a group of healthy children: phys-

ical functioning (61.19±18.57 vs 86.86±13.88), emotional

functioning (66.29±14.08 vs 78.21±18.64), social function-

ing (69.19±22.11 vs 84.04±17.43), school functioning

(65.83±28.93 vs 79.92±16.93), and overall HRQoL

(65.83±28.93 vs 82.87±13.6) [9]. Table 5 summarizes the

significant correlation between BSSS, CBS, and GHQ-12

and parents’ age, education, professional career, family

structure (complete/single parent), having or not having oth-

er children, and source of income (professional career vs

welfare benefits). The level of general strain (CBS) declared

by women was significantly higher than that declared by

men (2.63, 1.91–3.0 vs 1.94, 1.75–2.75, p = 0.03). Guardians

who live in medium-sized cities demonstrated a higher level

of social isolation (3, 2.33–3.42) and total burden index

(2.59, 2.0–2.77) than residents in rural areas and in large

cities (social isolation 2.0, 1.33–2.75 and 2.33, 1.37–2.84,

respectively; p = 0.02; total burden index: 1.82, 1.58–2.48

and 2.16, 1.7–2.73, respectively; p= 0.01). No significant

differences were found between residents in rural areas and

large cities in this regard.

Perceived available instrumental support was lowest

among small-town residents (3.25, 2.19–4.0) in comparison

with village residents (3.75, 3.75–4) and city residents (4.0,

Parameter Number Percentage

Mothers 40a 100

Age, mean ± SD, (years) 28.16±6.0

Mother’s education level

Elementary/trade school 14 35

High school 15 37.5

University degree 11 27.5

Employment

Yes 29 72.5

No 11 27.5

Healthy

Yes 34 85

No 6 15

Fathers 39b 100

Age, mean ± SD, (years) 40.03±9.27

Father’s education level

Elementary/trade school 24 61.54

High school 7 17.95

University degree

Employmentc

8 20.51

Yes 30 81.1

No 7 18.9

Healthy

Yes 33 84.62

No 6 15.38

Family

Full 36 87.8

Single-parent 5 12.2

Sibling

Yes 30 73.17

No 11 26.83

2162 Pediatr Nephrol (2013) 28:2157–2167

Table 3 Changes in the family observed by the parents after chronic kidney disease (CKD) diagnosis in the child

Mothers’ evaluation n=40a Fathers’ evaluation n =35a P valued

Yes

No

Yes

No

n %

n %

n %

n %

Change of location of residence 3 7.5

37 92.5

1 2.86

34 97.14 0.61

Changes made to current residence 24 60 16 40 20 57.14 15 42.86 0.81

Change in financial status 16 40 24 60 16 45.71 19 54.29 0.64

Deterioration 16 40 16 45.71

Improvement 0 0

Change of income source 9 22.5 31 77.5 7 20 28 80 1

Caring for the child 0.14

Mother 34 85 24 68.57

Father 1 2.5 1 2.86

Both parents 5 12.5 10 28.57

Participation of other people in child care 22 55 18 45 18 51.34 17 48.57 0.81

Grandparents 18 15

Siblings 2 3

Cousins 2 0

Changes in attitude toward the ill child 15 37.5 25 62.5 9 25.71 26 74.29 0.32

Improvement 14 35.0 9 25.71

Deterioration 1 2.5 0

Changes in attitude toward other children b4 13.33 26 86.67 c4 16.0 21 84.0 1

Improvement 4 13.33 3 12

Deterioration 0 1 4

Changes in relations among children b10 33.33 20 66.67 c6 24 19 76 0.55

Improvement 9 30.0 6 24

Deterioration 1 3.33 0

Changes in social contacts 25 62.5 15 37.5 17 48.57 18 51.43 0.25

Improvement 1 2.5 0

Deterioration 24 60.0 17 48.57

New friendship 28 70 12 30 17 48.57 18 51.43 0.09

Data shown as a number of responses (percent)

a Data collected from 75 surveys (40 mothers, 35 fathers); missing surveys (7; 7.32 %): 4 fathers, 1 mother, who do not live in the same household; 2

fathers did not fill out this part of the survey

b n =30, c n =25; d differences between mothers’ and fathers’ groups, p value

Table 4 Evaluation of parents’ relationships with other people: 1 (very bad), 5 (very good)

Mother Father

n 1 2 3 4 5

n 1 2 3 4 5

Father/mother of the child 38 3 (7.9) 1 (2.6) 5 (13.2) 14 (36.8) 15 (39.5) 35 2 (5.7) 1 (2.9) 2 (5.7) 17 (48.6) 13 (37.1)

Child with CKD 40 0 0 1 (2.5) 10 (25) 29 (72.5) 35 0 0 3 (8.6) 14 (40) 18 (51.4)

Other children 30 0 1 (3.3) 0 11 (36.7) 18 (60) 25 0 0 2 (8) 13 (52) 10 (40)

Friends 40 3 (7.5) 3 (7.5) 10 (25) 12 (30) 12 (30) 35 0 0 8 (22.9) 18 (51.4) 9 (25.7)

Nurses 40 1 (2.5) 0 0 15 (37.5) 24 (60) 25 1 (4) 0 1 (4) 13 (52) 10 (40)

Doctors 40 1 (2.5) 0 1 (2.5) 13 (32.5) 25 (62.5) 25 1 (4) 0 2 (8) 12 (48) 10 (40)

Social workersa 40a 3 (7.5) 0 1 (2.5) 8 (20) 11 (27.5) 25b 3 (12) 2 (8) 0 3 (12) 3 (12)

CKD chronic kidney disease

Data shown as a number (%)

a 17 mothers (42.5 %) did not deal with social workers; b 14 fathers (56 %) did not deal with social workers

Pediatr Nephrol (2013) 28:2157–2167 2163

Table 5 Paediatric Quality of Life Inventory (PedsQL) 4.0 generic core scales from child’s self-report (for ages 5–18; n= 31) and parent–proxy report (main caregivers and second parents)

Characteristic APD children n =31 Main caregivers of APD children n=31 Second parents of APD children n=13

Physical functioning 62.5 (50.0–75.0) a,b 56.24 (40.63–62.5) 53.13 (39.84–65.63)

Emotional functioning 70.0 (56.25–73.75) a,b 55.0 (40.0–70.0) 55.0 (50.0–71.25)

Social functioning 70.0 (50.0–90.0) a 55.0 (40.0–70.0) 65.0 (53.75–81.25)

School functioning 62.5 (50.0–75.0) 55.0 (35.0–65.0) 60.0 (47.5–70.0)

Overall HRQoL 64.13 (51.09–75.0) a,b 54.35 (38.87–64.13) 54.35 (48.91–63.32)

Data are presented as median and quartiles (first–third quartile)

APD automated peritoneal dialysis

a APD children vs. main caregivers, p< 0.05

b APD children vs. second parents, p< 0.05

3.25–4.0) (p= 0.03). Parents living in small towns also per-

ceived less available emotional support and sought it to a

lesser extent than did others; however, differences were not

statistically significant. There was no correlation between

BSSS, CBS, and GHQ-12 results and duration of CKD,

remaining under the care of a nephrology specialist and the

duration of renal replacement therapy, or distance between

place of residence and a nephrology center. The method of

teaching a child (general; home school) had no effect on

parents’ test results. Parents who helped their children with their

studying differed significantly from parents who did not help

their children in terms of currently received information support

(2.9, 2.4–3.2 vs 3.4, 3.0–3.6; p=0.004) and instrumental support

(3.2, 2.4–3.8 vs 4.0, 3.2–4.0; p=0.02), which they rated lower.

A statistically significant negative correlation was found

between PedsQL (total score) and CBS (total burden index)

(r= −0.51, p= 0.001) and GHQ-12 (r= −0.55, p = 0.0002); a

positive correlation was found between PedsQL (total score)

and certain BSSS subscales: need for support (r = 0.31, p

=0.05), support seeking (r= 0.36, p =0.02), perceived avail-

able emotional support (r= 0.65, p= 0.001), and instrumental

support (r = 0.32, p= 0.04). Also, the following correlations

were observed: a positive correlation between CBS (total

burden index) and GHQ-12 (r= 0.73, p= 0.001) and negative

Table 6 General Health Ques- tionnaire (GHQ-12), Berlin So-

cial Support Scales (BSSS), and

Caregiver’s Burden Scale (CBS)

test results among parents of

children on peritoneal dialysis

Berlin Social Support Scale

Perceived available support:

Parents

Main caregivers n=41 Second parents n =17 P valuea

Emotional 3.5 (3.0–4.0) 3.25 (2.69–3.81) 0.23

Instrumental 3.75 (3.19–4.0) 3.75 (2.69–4.0) 0.8

Need for support 3.25 (2.75–3.5) 3.0 (2.25–3.31) 0.17

Support seeking 3.2 (2.55–3.8) 2.8 (2.2–3.1) 0.14

Actually received support:

Emotional 2.8 (2.2–2.8) 2.8 (2.3–2.8) 0.37

Informational 3.0 (2.6–3.4) 3.0 (2.3–3.4) 0.48

Instrumental 3.4 (2.6–4.0) 3.2 (2.3–4) 0.7

Caregiver Burden Scale

General strain 2.63 (1.88–3.0) 1.88 (1.75–2.56) 0.02

Social isolation 2.33 (1.48–3.33) 2.33 (1.33–2.75) 0.037

Disappointment 2.6 (1.8–3.00) 2.4 (1.8–3.0) 0.65

Emotional involvement 1.33 (1.22–2.33) 1.33 (1.25–2.0) 0.77

Environment 1.67 (1.22–2.22) 1.67 (1.0–2.0) 0.29

Data are presented as median and Total burden index 2.41 (1.76–2.77) 2.0 (1.58–2.42) 0.12

quartiles (first–third quartile)

a Main caregivers vs. second parents,

General Health Questionnaire

Total

3 (0–7)

1 (0–2.25)

0.05

2164 Pediatr Nephrol (2013) 28:2157–2167

p value

Pediatr Nephrol (2013) 28:2157–2167 2165

correlations with BSSS: perceived available emotional sup-

port (r= −0.6, p = 0.001), perceived available instrumental

support (r= −0.42, p =0.005), actually received informational

support (r= −0.5, p = 0.01), and instrumental support (r=

−0.55, p = 0.001). GHQ-12 correlated negatively with

perceived available emotional support (r= −0.49, p= 0.001),

perceived available instrumental support(r =−0.33, p= 0.03),

actually received informational (r= −0.38, p= 0.02), and in-

strumental support (r= −0.46, p= 0.003). In the group of secondary caregivers, no significant correla-

tion was found between PedsQL test scores (total score) and

GHQ-12, CBS, and BSSS results, with the exception of one

subscale: support seeking (r=0.66, p=0.004). Significant posi-

tive correlations were demonstrated between GHQ-12 and total

burden index in CBS (r=0.71, p=001) and negative correlations

between GHQ-12 and the BSSS subscales perceived available

support (emotional: r=−0.54, p=0.03, instrumental: r=−0.57,

p=0.02), and actually received support (emotional: r=−0.54,

p=0.03, informational: r=−0.5, p=0.04, instrumental:

r=−0.69, p=0.002). The CBS total burden index correlated negatively with the BSSS subscales perceived available support

(emotional: r=−0.53, p=0.03, instrumental: r = −0.48, p

= 0.05), and actually received support (emotional: r =

−0.49, p = 0.05 and instrumental: r = −0.66, p = 0.004).

Discussion

This paper presents for the first time the psychosocial aspects

in families of Polish children with ESRD treated with APD.

The studied group, although small, can be regarded as repre-

sentative of the Polish population of children aged ≥2 treated

with APD. Since 2003, a decline in the number of children

treated with dialysis has been observed due to the increased

number of kidney transplants [18]. Furthermore, children ≤2-

years of age in Poland constitute a significant proportion of

patients on PD who, along with their parents, are not included

in the study due to the established evaluation criteria. It would,

therefore, seem that the obtained data may be considered not

accidental for the illness case studied by us.

The few studies on the psychosocial situation of children

treated with PD and their families published thus far have

dealt with small groups of patients, inter alia, 32 patients and

their 32 guardians [19], four families (14 people in all) [20],

17 patients and ten parents [21], 20 children and 28 parents

[4]. Some studies focused on children treated with dialysis

regardless of type [22–24]. However, the dialysis method is

known to be one of the important factors influencing the

QoL of adults with CKD and their families [25, 26].

Our survey data show a harsh economic situation in the

studied families. However poor the financial situation is in

families of children on ADP, no definite conclusion can be

drawn that it is the result of the child’s illness. Data on

parents’ occupations and sources of income before the

child’s illness were not collected. It must be emphasized that

40 % of mothers and 45.71 % of fathers claimed the deteri-

oration of financial situation followed the diagnosis of their

child’s illness.

Almost half of the examined families receive social secu-

rity benefits that, in Poland, are awarded to families with

very low income. Nearly 75 % of mothers do not work,

which may be explained by the need to look after a child

with ESRD. As demonstrated in the studied group, mothers

also act as caregivers in 98 % of the cases. It was also

observed that nearly 20 % of fathers do not work. Improve-

ment in families’ economic situations seems to be the “field

of action” for social workers. This area, however, reveals

certain inconsistencies: 42 % of mothers have never dealt

with social workers and another 10 % evaluated their in-

teractions with said workers as not good (56 % and 20 % of

fathers, respectively). A poor contact with social workers in

parents’ valuation/opinion may stem from the fact that ac-

cess to social workers and psychologists is on an ad hoc

basis. These people probably do not know the dialysis treat-

ment specificity. Our findings regarding the socioeconomic

situation (SES) of families of PD patients are consistent with

those of other authors who recognize SES as one of the

important factors that determine the quality of care for PD

patients [19, 27].

The positive observation is that nearly all children attend

schools with standard education programs. As other authors

have pointed out, education is an important factor in prepar-

ing children for participation in adult life [28]. It should be

noted, however, that >50 % of children take advantage of

individual tutoring. It may improve efficiency but on the

other hand may lead to social isolation and limited interper-

sonal communication. More than 60 % of PD patients require

more help with schoolwork, which is provided by parents

and which may constitute an additional burden.

A child’s illness affects changes in the family that most

often include living space rearrangement, participation of

additional individuals in caring for the sick child, and the

deterioration of existing social relationships. Parents often

only establish new friendships with other sick children’s

parents. This is beneficial in exchanging experiences; how-

ever, it also indicates the affected families’ isolation. Any

information provided by the parents about changes in the

family connected with the child’s disease should be taken

into consideration during contacts with medical personnel.

They should be mentioned in conversations. It may help

members of the family adapt to this dialysis situation.

Our study shows positive relationships between parents and

medical personnel in parents’ opinions. Expectations toward

medical personnel included more information regarding the

child’s illness. It is alarming that >63 % of primary caregivers

asserted that kidney transplantation had not been discussed with

2166 Pediatr Nephrol (2013) 28:2157–2167

them. This seems inconceivable considering the standards that

exist in Poland; however, it does suggest that information

regarding this issue is insufficient, was not relayed in a

comprehensible manner, or the parents were experiencing

intellectual difficulties understanding it.

The perceived HRQoL among the surveyed children was

low, which is consistent with the findings of most authors

who have used the PedsQL test [22, 29]. HRQoL is a very

individualized, subjective perception based on feelings, but

different scales are based only on observable indicators of

the health condition. Patients rated their school and physical

functioning as particularly low. It is worth mentioning that

the overall QoL as well as physical and emotional function-

ing was rated decidedly lower by parents than by their

children. Similar results were obtained by other authors

who dealt with chronically sick children of different etiology

[6]. This situation may lead to overprotectiveness and thus

hamper the child’s development of self-reliance and self-

sufficiency and, as a result, amplify the perceived burden

experienced by the parents. This hypothesis is supported by

the observed correlations between test scores among parents.

Our study shows that parents/primary caregivers evaluated

the level of overall burden as medium. Contrary to expecta-

tions, a high level of burden pertained to a relatively small

proportion of caregivers. It can be assumed that acting as a

caregiver also carries positive effects that reduce the perceived

burden [30]. Secondary caregivers rated the burden as low or

medium. This observation is consistent with the claimed im-

provement of relationships with the sick child by the parents

(or lack of changes toward the child) and the evaluation of the

relationship with the patient as very good in most cases. In

turn, high levels of the perceived burden were observed in the

following areas: physical and mental fatigue, responsibility

for the child’s well-being, extended time devoted to the child

and lack of time for oneself, being limited by the child’s

affairs, and disregard for one’s own health. Parents also

obtained high scores on the disappointment scale. In their

assessment, conditions such as financial sacrifices connected

with the illness, inability to fulfil own plans, loneliness, and

isolation were common. Studies have not, however, suggest

feelings such as pervasive sadness, resentment, guilt, or loss to

be present among caregivers of adult patients on dialysis [31].

In order to assess parents’ needs, we applied several

scales, including BSSS. Social support, as defined by

Schwarzer and Schulz, includes resources and help provided

by other people [32]. Researchers and theorists distinguish

different types of social support: instrumental support (shar-

ing certain goods), informational support (advice on how to

solve a problem), and emotional (comforting and showing

compassion) [33]. Our research findings suggest that sick

children’s parents have the need for social support. Comparing

said findings with observations by other authors shows that the

need for support is higher in those parents than in parents of

healthy individuals, as well as in patients with chronic condi-

tions such as cardiovascular and musculoskeletal diseases [16].

Research by Duits et al. suggests that the reported need for

support may be a predictor of depression or anxiety [34]. At the

same time, parents identify the possibility of such support and

report seeking support, i.e., other people’s help. These obser-

vations evidence parents’ adaptation to their child’s illness,

which may stem from its relatively long duration. However, it

should be noted that the received support is lower than the need

for it. According to the Schwarzer and Leppin theory, received

support is a factor in reducing risk in stress situations [35]. In

this context, the obtained results indicate the occurrence of

insecurity, anxiety, and depression among parents. Our study

shows that parents most often receive instrumental support

while mostly lacking emotional support.

The GHQ-12 is a screening instrument aimed at assessing the

mental condition of adults in the general population. It allows us

to assess the increase of nonpsychotic mental disorders and to

select people who are most likely to develop them. The feeling of

mental disorder may be also assessed with GHQ—as well as the

subjective assessment of its results—called nonspecific psycho-

logical distress. Over half of primary caregivers received GHQ-

12 scores indicating the possible occurrence of abnormal mental

functioning. No mental history of parents was obtained, so it is

impossible to unambiguously indicate the basis for such mental

disorders. However, the results may signal anxiety, depression,

and the loss of confidence as a reaction to difficulties and the

inability to fulfill their own goals and objectives. We found

correlations between assessment of the parent’s own mental

health and perceived available support (emotional, informa-

tional, and instrumental), which suggests that external envi-

ronmental factors may be an important determinant of an

individual’s mental state. The results underline the strong need

to provide continuous psychological care for caregivers.

Among parents, most tests demonstrated no significant differ-

ences between primary caregivers and secondary parents. The

former indicated, however, significantly higher general strain and

poorer overall mental health as a consequence of greater burdens.

Our study revealed no significant pattern in the dimensions of

psychosocial functioning among parents based on parameters

such as age, education, professional career, family structure

(complete–single parent), having or not having other children,

and source of income (professional career vs. welfare benefits).

The demonstrated higher overall burden among women stems

from their role as primary caregivers. Interesting observations

were made with regards to the influence of place of residence on

psychosocial functioning. Residents in medium-sized cities are at

a disadvantage in terms of the sense of social isolation, overall

burden, and perceived available instrumental support. This may

stem from anonymity and loosening of social ties, more intensi-

fied need (as opposed to villages), or lack of access to take

advantage of various benefits of modern, urban life easily avail-

able in large cities.

Pediatr Nephrol (2013) 28:2157–2167 2167

Our study has its limitations. The research material, though

representative, is not extensive, and includes children of different

ages. The research did not include families of children <2 years

of age, as caring for them may be more challenging and the

shorter duration of the situation and lack of adaptation to it may

be a source of many problems. It would be necessary to conduct

prospective studies in order to analyze the dynamics of changes

in the process of adapting to the burdens related to performing

dialysis. The QoL in patients’ families as a multidimensional

concept requires the use of multidimensional tools in its assess-

ment. Thus far, no appropriate tools have been developed to

evaluate the psychosocial situation of families of patients with

CKD. Results may, therefore, prove difficult to compare between

studies, as there may be little or no similarities between the tools

used. Nevertheless, we believe that our findings may prove

useful in determining the direction of future studies of psycho-

social help provided to children on APD and their families, as

well as formulating initial support programs in this area. We were

largely unable to carry out tests of both parents. Lack of response

from fathers points to the polarization of roles in the families of

sick children. Observations of similar perceptions pertaining to

changes in the family after the diagnosis, relationships with in-

dividuals in the immediate surroundings, burdens, and

social support regardless of the degree of involvement in

caring for a sick child are all areas that require further research.

The findings may suggest ways to help support harmony in

families and also different ways of helping families adapt to

having a member with CKD.

In conclusion, this study shows that the financial situation in

families of children treated with APD is challenging. It is neces-

sary to expand the involvement of social workers in helping

patients’ families. Despite rating the level of overall burden as

medium, parents who provide the primary care to children on PD

report limitations in self-realization and depend upon emotional

support. More than half of them may have impaired mental

function. There is the strong need to provide continuous psycho-

social care for caregivers. Contrasting perceptions of children’s

overall QoL and physical and emotional functioning, as experi-

enced by the children themselves and their primary caregivers,

may result in challenges in the patient’s adaptation to adult life.

Determinants of the PD patient’s family’s ability to cope with the

burden of care require further research.

Open Access This article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and

reproduction in any medium, provided the original author(s) and the

source are credited.

References

1. Schaefer F, Warady BA (2011) Peritoneal dialysis in children with

end-stage renal disease. Nat Rev Nephrol 7:659–668

2. Zaritsky J, Warady BA (2011) Peritoneal dialysis in infants and

young children. Semin Nephrol 31:213–224

3. Lai WM (2009) Quality of life in children with end-stage renal disease: does treatment modality matter? Perit Dial Int Suppl 2:

S190–S191

4. Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences of parents who have children with chronic kidney disease: a systematic

review of qualitative studies. Pediatrics 121:349–360

5. de Paula ES, Nascimento LC, Rocha SM (2008) Roles assessment in families of children with chronic renal failure on peritoneal

dialysis. Int J Nurs Pract 14:215–220

6. Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC (2012) A

comparison of doctors’, parents’ and children’s reports of health

states and health-related quality of life in children with chronic

conditions. Child Care Health Dev 38:186–195

7. Tong A, Lowe A, Sainsbury P, Craig JC (2010) Parental perspec- tives on caring for a child with chronic kidney disease: an in-depth

interview study. Child Care Health Dev 36:549–557

8. Abdel-Kader K, Myaskovsky L, Karpov I, Shah J, Hess R, Dew MA, Unruh M (2009) Individual quality of life in chronic kidney

disease: influence of age and dialysis modality. Clin J Am Soc

Nephrol 4:711–718

9. Varni JW, Burwinkle TM, Katz ER (2003) The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and

validity. Ambul Pediatr 3:329–341

10. Varni JW. PedsQL TM (Pediatric Quality of Life Inventory TM). www.pedsql.org

11. Goldberg D, The General Health Questionnaire. http://www. gl- assessment.co.uk/products/general-health-questionnaire-0

12. Schulz U, Schwarzer R (2003) Social support in coping with illness: the Berlin Social Support Scales (BSSS). Diagnostica

49:73–82

13. Schwarzer R. Berlin Social-Support Scales (BSSS). http://

userpage.fu-berlin.de/~health/soc_pol.htm, 5.10.2011

14. Elmstahl S, Malmberg B, Annerstendt L (1996) Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden

scale. Arch Phys Med Rehabil 77:177–182

15. Makowska Z, Merecz D (2001) Mental health assessment on a research basis by David Goldberg Questionnaires. Nofer Institute

of Occupational Medicin, Łódź [in Polish]

16. Łuszczyńska A, Smith M, Mazurkiewicz M, Schwarzer R (2006) Berlin Social Support Scales (BSSS). The results of initial research

on the adaptation of the scales and their psychometric properties.

Psychol Stud 44:17–27

17. Jaracz K, Grabowska-Fudala B (2007) The caregiver’s burden scale. Polish version. Publishing House of Poznan University of

Medical Sciences, Poland

18. Grenda R, Rubik J, Rutkowski B (2010) Report on renal replacement therapy in children in Poland 2010. Polish Ministry of

Health, Warszawa

19. Tsai TC, Liu SI, Tsai JD, Chou LH (2006) Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int

70:1983–1987

20. de Paula ES, Nascimento LC, Rocha SM (2008) The influence of social support on strengthening families of children with chronic

renal failure. Rev Lat Am Enfermagem 16:692–699

21. Chiu MC, Ng CF, Lee LP, Lai WM, Lau SC (2007) Automated

peritoneal dialysis in children and adolescents—benefits: a survey

of patients and parents on health-related quality of life. Perit Dial Int

27(Suppl 2):S138–S142

22. McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF (2006) Quality of life in children with chronic kidney

disease-patient and caregiver assessments. Nephrol Dial Transplant

21:1899–1905

23. Wiedebusch S, Konrad M, Foppe H, Reichwald-Klugger E, Schaefer F, Schreiber V, Muthny FA (2010) Health-related quality

2168 Pediatr Nephrol (2013) 28:2157–2167

of life, psychosocial strains, and coping in parents of children with

chronic renal failure. Pediatr Nephrol 25:1477–1485

24. Buyan N, Türkmen MA, Bilge I, Baskin E, Haberal M, Bilginer Y, Mir S, Emre S, Akman S, Ozkaya O, Fidan K, Alpay H, Kavukcu S,

Sever L, Ozçakar ZB, Dogrucan N (2010) Quality of life in children

with chronic kidney disease (with child and parent assessments).

Pediatr Nephrol 25:1487–1496

25. Morton RL, Tong A, Webster AC, Snelling P, Howard K (2011) Characteristics of dialysis important to patients and family

caregivers: a mixed methods approach. Nephrol Dial Transplant

26:4038–4046

26. Boateng EA, East L (2011) The impact of dialysis modality on

quality of life: a systematic review. J Ren Care 37:190–200

27. Bruce MA, Beech BM, Sims M, Brown TN, Wyatt SB, Taylor HA, Williams DR, Crook E (2009) Social environmental stressors,

psychological factors, and kidney disease. J Investig Med 57:583–

589

28. Groothoff JW, Grootenhuis MA, Offringa M, Stronks K, Hutten GJ, Heymans HS (2005) Social consequences in adult life of end-

stage renal disease in childhood. J Pediatr 146:512–517

29. Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW (2006) Health-related quality of life in pediatric patients with

ESRD. Pediatr Nephrol 21:846–850

30. Andrén S, Elmståhl S (2005) Family caregivers’ subjective experiences of satisfaction in dementia care: aspects of burden, subjective health

and sense of coherence. Scand J Caring Sci 19:157–168

31. White Y, Grenyer BF (1999) The biopsychosocial impact of end- stage renal disease: the experience of dialysis patients and their

partners. J Adv Nurs 30:1312–1320

32. Schulz U, Schwarzer R (2004) Long-term effects of spousal support

on coping with cancer after surgery. J Soc Clin Psychol 23:716–732

33. Pierce GR, Sarason IG, Sarason BR (1991) General and relationship-based perceptions of social support: are two constructs

better than one? J Pers Soc Psychol 61:1028–1039

34. Duits AA, Boeke S, Taams MA, Passchier J, Erdman RA (1997) Prediction of quality of life after coronary artery bypass graft

surgery: a review and evaluation of multiple, recent studies.

Psychosom Med 59:257–268

35. Schwarzer R, Leppin A (1991) Social support and health: a

theoretical and empirical overview. J Soc Pers Relat 8:99–127