ORIGINAL ARTICLE

Health-related quality of life, psychosocial strains, and copingin parents of children with chronic renal failure

Silvia Wiedebusch & Martin Konrad & Helmut Foppe &

Evelyn Reichwald-Klugger & Franz Schaefer &

Vera Schreiber & Fritz A. Muthny

Received: 21 December 2009 /Revised: 8 March 2010 /Accepted: 22 March 2010 /Published online: 12 May 2010# IPNA 2010

Abstract Health-related quality of life (HRQOL) in parentsof children suffering from renal disease is often diminishedby the illness burden experienced in daily life and byunfavorable ways of coping. Our aim was to examine therelationship between psychosocial strains perceived byparents, their ways of coping, and HRQOL. In ananonymous cross-sectional study, parents completed aquestionnaire concerning psychosocial strains, coping strat-egies, and HRQOL, as well as sociodemographic and illnessparameters. Study participants were recruited in twooutpatient dialysis centers. Participating in the study were195 parents (105 mothers, 90 fathers; age 43±8 years;representing 108 families) of children suffering from renaldisease (age 12±5 years). Parents of children with chronicrenal failure reported moderate HRQOL with parents ofchildren undergoing dialysis experiencing more limitationsin quality of life than parents of children living with a

kidney graft and parents of children undergoing conserva-tive treatment. Mothers experienced lower HRQOL andhigher psychosocial strains than fathers. HRQOL waspredicted by the coping strategies “focusing on child”(β=–0.25), “improving marital relationship” (β=0.24),“seeking social support” (β=–0.22) and “self-acceptationand growth” (β=0.19) as well as parents′ perceived limitationby illness in daily life (β=–0.15; explained variance 57%). Inthe comprehensive care for families with a child suffering froma renal disease, screening for psychosocial strains and ways ofcoping, along with applying interventions to strengthenadaptive coping strategies, may be a preventative means ofimproving parents′ quality of life.

Keywords Chronic renal failure . Parents . Health-relatedquality of life . Psychosocial strains . Coping

Introduction

Progressive renal disease may occur at any age duringchildhood. Current incidence of renal replacement therapy(RRT) in children and adolescents is 7 to 8 per million inthe age-related population (pmp) under 16 years [1] andprevalences vary between 55 and 62 pmp [1, 2]. Because ofthe progressive nature of chronic renal failure, irrespectiveof the underlying etiology, most patients and families haveto accept and, in a similar way, have to come to terms withthe different phases of the disease, i.e. (I) the onset anddiagnosis, (II) progressive renal failure, and (III) end-stagerenal disease with initiation of RRT, which includehemodialysis, peritoneal dialysis, and renal transplantation.

Throughout these phases, the parents of childrensuffering from chronic renal failure experience multiplepsychosocial strains, such as chronic sorrow about the

S. Wiedebusch :V. Schreiber : F. A. MuthnyDepartment of Medical Psychology,University Hospital of Muenster,48149 Münster, Germany

M. Konrad :H. FoppeKfH-Nierenzentrum für Kinder und Jugendliche,University Hospital of Muenster,48149 Münster, Germany

E. Reichwald-Klugger : F. SchaeferDivision of Pediatric Nephrology, University Children’s Hospital,69120 Heidelberg, Germany

S. Wiedebusch (*)Developmental Psychology,University of Applied Sciences Osnabrueck,Caprivistr. 30 a,49076 Osnabrueck, Germanye-mail: s.wiedebusch@fh-osnabrueck.de

Pediatr Nephrol (2010) 25:1477–1485DOI 10.1007/s00467-010-1540-z

child’s development and well-being, uncertainty withrespect to prognosis, constant vigilance with regards toillness symptoms, and fatigue due to daily caregiving,which may lead to adverse effects on social and family life,e.g. social isolation or depression of caregivers [e.g. 3–5].A high impact on family life was reported by parents whosechildren underwent kidney transplantation; they reachedlow scores on emotional functioning and showed highlevels of worry [6]. Parents of pediatric organ transplantrecipients experience significant psychological distress andas a consequence show moderate to severe posttraumaticstress symptoms [7, 8]. Compared to parents of healthychildren, depression is significantly more common inparents of children suffering from renal disease [9].

Usually, mothers are the ones more involved in dailycare of a chronically ill child; this is also the case in parentsof children with a renal disease [10, 11], leading toimpairments in the mothers′ personal and working lives.As a consequence, in a study with parents of childrenundergoing dialysis, only 25% of the caregivers, mostlymothers, had full-time jobs [9]. The higher illness burden ofmothers in their role as primary caregivers possibly resultsin greater limitations of their quality of life compared tofathers—a research question that has been neglected so far.

Parents use multiple and different ways to cope with theirchild’s chronic disease. A qualitative study based on focusgroups revealed that parents of children with a renal diseaseused a wide range of coping strategies such as seeking socialsupport, focusing on positive aspects of life, and emotionalor religious coping [12]. Beyond this, previous results showthat parents of children who underwent renal transplanta-tion tended to use passive coping strategies (e.g. passiveappraisal [13]) and thus may be prone to psychologicaldisturbances. Further quantitative studies on preferredcoping strategies of parents whose children are sufferingfrom renal diseases have not occurred up to now.

The challenging tasks and emotional strains experiencedwhen caring for a child with chronic renal failure as well asunfavorable coping strategies may lead to diminished health-related quality of life (HRQOL) in parents. While numerousstudies have evaluated the quality of life of children andadolescents suffering from renal disease [14–17] with afollow-up into adulthood [18], there has been a notable lackof studies on parents′ HRQOL. One study suggests thatHRQOL is significantly compromised in parents of childrensuffering from renal disease as compared to parents ofhealthy children [9]. Interestingly, parental HRQOL does notseem to be affected by their child’s mode of treatment. Forexample, parents of children undergoing automated perito-neal dialysis reached similar HRQOL scores as parents ofchildren living with a kidney graft [15]. Relationshipsbetween psychosocial strains, coping, and HRQOL in parentsof children with renal diseases have not been analyzed.

Therefore, the main goal of the present study was toexplore psychosocial strains and ways of coping in parentsof children suffering from chronic renal failure and toexamine their relationships to parental HRQOL. Further-more, potential differences in parents′ psychosocial out-come due to the child’s treatment modality as well aspotential gender specific differences between mothers’ andfathers′ outcomes, were assessed.

Methods

In a cross-sectional study, questionnaires were handed outto parents (one questionnaire each for mother and father),whose children were being treated for advanced chronicrenal failure in two pediatric nephrology centers inGermany (Heidelberg and Muenster). The study waslimited to parents of a child that:

& had been diagnosed with a chronic renal disease at least3 months previously, and

& was under the age of 22 and living together with theparents in one household.

Parents with insufficient German language skills werenot included. Questionnaires were returned by mail to theDepartment for Medical Psychology for anonymous dataanalysis.

Measurements

The following self-evaluation instruments were included toassess parents′ psychosocial strains, coping strategies, andHRQOL. Additionally, sociodemographic and illnessparameters were examined by the questionnaire.

Impact on Family Scale (IFS, German adaptation FaBel)[19] This instrument includes 33 items and assessespsychosocial strains on five subscales: “daily psychoso-cial strains” (15 items; e.g. “I gave up working becauseof my child’s illness.”), “personal emotional strains andworries concerning the future” (five items; “I worryabout my child’s future, when he or she is adult and I amnot there anymore.”), “financial burden” (four items;“The illness causes financial problems in my family.”),“siblings′ psychosocial strains” (six items; “Because ofmy child’s illness I worry about the health of my otherchildren all the time.”) and “problems with coping” (threeitems; “We try to treat our child like a ‘normal’ child.”;item is recoded). The items were answered on a four-pointLikert scale (1 = “is not right at all” to 4 = “is completelyright”) with higher values indicating a higher psychoso-cial burden. Cronbach’s α for the five subscales rangesfrom 0.70 to 0.89.

1478 Pediatr Nephrol (2010) 25:1477–1485

Social Orientations of Parents of Handicapped ChildrenQuestionnaire (SOEBEK) [20] This questionnaire includes23 items and assesses parents′ coping reactions to theirchild′s physical limitations. The following analyses refer tothe four subscales “improving marital relationship” (sixitems, e.g. “In challenging situations I find joint solutionswith my partner.”), “seeking social support” (six items, e.g.“I ask my friends for advice.”), “focusing on the handi-capped child” (six items, e.g. “The care for my ill child isthe most important at the moment.”) und “self-acceptationand growth” (five items, e.g. “I spend time on myself.”).The items are answered on a six-point Likert scale(1 = “never” to 6 = “very often”) with higher valuesindicating frequent use of the coping strategies referred toin the subscales. Cronbach’s α for the four subscales rangesfrom 0.73 to 0.84. The instrument differentiates betweenmothers′ and fathers′ coping, with mothers focusing on thehandicapped child and seeking social support more oftenthan fathers [20].

Freiburg Questionnaire of Coping with Illness (FKV) [21]With the short form of this questionnaire, parent’s copingwas assessed with 35 items, which could be answered on afive-point Likert scale (1 = “not at all” to 5 = “very strong”)with higher values indicating more frequent use of the waysof coping referred to in the subscales. Parents wereinstructed to answer the FKV with regard to how theyhad been coping with their child’s renal disease in the pastweek. Five subscales represent different coping styles:“depressive coping” (five items, e.g. “to ruminate”),“active, problem-focused coping” (five items, e.g. “tocome up with a plan and act accordingly”), “distractionand self-confidence” (five items, e.g. “distracting oneself”),“religiousness and search for meaning” (five items, e.g.“searching for meaning of the disease”) and “minimizationand wishful thinking” (three items, e.g. “dissimulationmeaning and impact”). The FKV has shown to be a reliable(Cronbach’s α ranges from 0.68 to 0.77) and validinstrument in the context of coping with chronic illness.

Ulm Quality of Life Inventory for Parents (ULQIE) [22]Parents′ perceived quality of life during the last week wasassessed by an instrument that was designed for parents ofchronically ill children. The 29 items of the ULQIE wereanswered on a five-point Likert scale (0 = “never” to4 = “always”). The total scale consists of the following fivesubscales: “physical and daily functioning” (seven items,e.g. “Last week I was able to maintain my normalactivities.”), “satisfaction with family support” (six items,e.g. “Last week we were able to maintain open communi-cation within our family.”), “emotional strain due to thechild’s illness” (four items, e.g. “Last week I was hopefuland optimistic.”), “self-development” (four items, e.g.

“Last week I had enough time to meet my friends andacquaintances.”) and “well-being” (four items, e.g. “Lastweek I felt burnt out.” (reversed item)). The total scale ofthe ULQIE consists of the un-weighted average of all 29ratings, a higher value indicating higher quality of life.Cronbach’s α is 0.91 for the total scale and ranges from 0.74to 0.88 for the subscales; retest-reliability is between 0.69and 0.86 [23]. The validity of the ULQIE is documented bysubstantial correlations with a generic quality of lifeinstrument (SF-36). Furthermore, the ULQIE allows differ-entiation between several pediatric illness groups.

Data analysis

For statistical data analysis, the programme SPSS 15.0 wasused. Statistical procedures included descriptive statistics,bivariate correlations, analysis of variance, and multipleregression analysis.

Results

Subjects One hundred ninety-five parents (105 mothers, 90fathers) aged between 22 and 65 years (43.4±7.8) agreed totake part in the study (rate of return 44.2%). These parentsrepresented 108 families; in 87 families mother and fatherboth answered a questionnaire, in 20 families only themother and in one family only the father answered aquestionnaire. Mothers and fathers did not differ withrespect to sociodemographic parameters (marital status,level of education) and their children’s age, duration ofillness and treatment modality.

Child’s age ranged between 1 and 22 years (12.0±5.3)and 65.1% of the patients were boys, reflecting the higherincidence on congenital anomalies of the kidneys and theurinary tract (CAKUT) in boys. Most of the children hadbeen suffering from a renal disease for longer than 5 years(66.9%). The current therapy was conservative treatmentwith a medical regimen for 15.4%, and hemodialysis orperitoneal dialysis for 16.4% of the children; more than60% had undergone a kidney transplantation (see Table 1).The high percentage of transplanted children in the sampleequals the national rate of kidney transplantations in renalreplacement therapy. In Germany, 75.1% of all children andyouths (under the age of 18) with chronic renal failure haveundergone renal transplantation [24]. According to theparents’ subjective ratings, 24.7% of the children werehardly or not at all limited by their illness in daily life,while 37.9% were moderately limited and 34.4% wereseverely limited. Parents of children undergoing dialysisperceived a higher limitation in daily life than parents ofchildren living with a kidney graft and parents of childrenundergoing medical treatment (F(2,176)=6.37; p≤0.01).

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HRQOL Parents of children suffering from renal diseaseestimated their general quality of life on the total scale ofthe ULQIE in an average range (x=2.50, SD=0.58). Theyachieved the highest scores in their satisfaction with theirfamily situation and the lowest scores in their options forself-development (see Table 2). The total score of theULQIE correlated significantly with parents′ subjectiveperception of the child’s limitation by illness in daily life,but not with duration of illness (see Table 6).

Although ULQIE total scores did not differ significantlyin parents of children undergoing conservative treatment,parents of children undergoing dialysis or parents ofchildren living with a kidney graft (F(2,175)=2.40; p=0.09), there were differences in HRQOL with regards tothe subscales “emotional strain” (F(2,178)=4.33; p≤0.05),“self–development” (F(2,179)=3.48; p≤0.05) and “well-being” (F(2,179)=6.05; p≤0.01; see Table 3). Parents ofchildren undergoing dialysis experienced the lowest scoreson all scales, whereas parents of children undergoingconservative treatment reached the highest HRQOL.

The comparison of HRQOL in mothers and fathersyielded significant differences on the total scale of theULQIE (t(188)=-2.27, p≤0.05) and the subscales “physicaland daily functioning” (t(190)=-2.02, p≤0.05) and “emotionalstrain” (t(191)=-2.66, p≤0.01), all differences with lowerscores for mothers. In pair-wise comparisons of mothers andfathers (87 couples), mothers reached a lower HRQOL withrespect to “emotional strain” (t(169)=-2.11, p≤0.05) only(see Table 5).

Psychosocial strains Parents reported relatively low psy-chosocial strains, assessed by the German adaptation of theImpact on Family Scale (FaBel, see Table 4) and scoredhighest on the subscale “emotional strains and worriesconcerning the future”. Parents of children undergoingdialysis experienced more psychosocial strains than parentsof children in the two other treatment groups, with asignificant group difference due to modes of treatment onthe subscale “daily psychosocial strains” (F(2,183)=3.61;p≤0.05).

Table 1 Sociodemographic and illness parametersa

Renal disease (n=195)

Parent’s age 22–65 years; x=43.4, SD=7.8

Parent’s gender

Mothers 105 (53.8%)

Fathers 90 (46.2%)

Parent’s marital status

Single 5 (2.6%)

Married/living with a partner 175 (89.7%)

Divorced/living separated 13 (6.7%)

n.s. 2 (1.0%)

Child’s number of siblings

No sibling 42 (21.5%)

1 sibling 100 (51.3%)

2 siblings 33 (16.9%)

3 siblings and more 20 (10.2%)

Parent’s highest level of education

Secondary school degree 125 (64.1%)

High school diploma 28 (14.3%)

University degree 24 (12.3%)

Other certification 12 (6.2%)

n.s. 6 (3.1%)

Child’s age

Younger than 6 years 27 (17.9%)

6 to 12 years 55 (28.2%)

13 years and older 103 (48.3%)

n.s. 19 (9.7%)

Child’s gender

Female 61 (31.3%)

Male 127 (65.1%)

n.s. 7 (3.6%)

Child’s diagnosis

Glomerular nephritis 7 (3.6%)

Congenital kidney malformation 71 (36.4%)

Heritable renal disease 38 (19.5%)

Other 55 (28.2%)

Not known 16 (8.2%)

n.s. 8 (4.1%)

Child’s duration of illness

Up to 1 year 14 (6.6%)

1–5 years 42 (21.4%)

Longer than 5 years 129 (66.9%)

n.s. 10 (5.1%)

Child’s current therapy

Dialysis 32 (16.4%)

Kidney graft 121 (62.1%)

Conservative treatment 30 (15.4%)

n.s. 12 (6.2%)

Parent’s perceived limitation by illness

Child not at all limited 5 (2.6%)

Child slightly limited 43 (22.1%)

Table 1 (continued)

Renal disease (n=195)

Child moderately limited 74 (37.9%)

Child highly limited 51 (26.2%)

Child very highly limited 16 (8.2%)

n.s. 6 (3.1%)

n.s. not stateda Children whose parents both participated in the study are treated as twocases (n=195)

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Mothers scored significantly higher than fathers on thetotal scale (t(185)=3.00, p≤0.01) and on the subscales “dailypsychosocial strains” (t(194)=2.49, p≤0.01), “financialburden” (t(187)=2.25, p≤0.05) and “emotional strains andworries concerning the future” (t(193)=3.04, p≤0.01). Inpair-wise comparisons of mothers and fathers, mothersreported significantly more “emotional strains and worriesconcerning the future” (t(169)=2.39, p≤0.05) than fathers(see Table 5). Parents′ psychosocial strains correlatedsignificantly with their HRQOL with the exception of thesubscale “problems with coping” (see Table 6).

Coping According to the FKV, parents preferred the copingstrategies “religiousness and search for meaning” and “active,problem-focused coping” when reflecting coping with theirchild’s renal disease during the last week (see Table 4).Depressive coping was more common in parents of childrenundergoing dialysis than in the other treatment groups(F(2,170)=3.35; p≤0.05).

Out of the four subscales of the SOEBEK, the most frequentcoping strategies parents used were improving partnership andsupporting each other as well as focusing on the child(see Table 4). Parents of children undergoing dialysis reportedusing the coping strategy “seeking social support” more oftenthan parents from the other treatment groups (F(2,177)=3,78;p≤0.05). Parents of children living with a kidney graftsignificantly preferred “self-acceptation and growth” as a wayof coping in comparison to parents of children with othertreatment modalities (F(2,162)=4,39; p≤0.05).

Mothers reported using the coping strategies “depressivecoping” (t(181)=2.45, p≤0.05), “active, problem-focusedcoping” (t(180)=3.38, p≤0.01), “distraction and self-confidence” (t(181)=2.73, p≤0.05), “religiousness andsearch for meaning” (t(182)=3.95, p≤0.001), “seeking socialsupport” (t(190)=3.95, p≤0.001) and “focusing on thehandicapped child” (t(186)=2.87, p≤0.01) more often thanfathers. The same differences between mothers′ and fathers′coping were found when solely considering couples ofmothers and fathers in pair-wise comparisons (see Table 5).Parents′ coping strategies showed significant correlationswith their HRQOL with the exception of the copingstrategy “seeking social support” (see Table 6).

Predictors of HRQOL In order to find predictors of parents′quality of life, a multiple regression analysis with a step-wiseprocedure was applied. Sociodemographic parameters(parents′ age, gender, marital status, and educational back-ground, child’s age, and gender), illness parameters (durationof illness, treatment modality, parents′ subjective perceptionof the child’s limitation by illness in daily life) as well aspsychological parameters (psychosocial strains, copingstrategies) were analyzed as independent factors. Thesubscale “depressive coping” was excluded from regressionanalysis because it was confounded with the dependentvariable (correlation with ULQIE r≥0.60; see Table 6).Parents′ HRQOL was predicted by the coping strategy“focusing on the child” (β=−0.25). Parents who focusedless on the child with chronic renal failure in their daily life

HRQOL x SD Range Cronbach’s αa

ULQIE-total scale 2.50 0.66 1.1–3.6 0.93

Scale 1: Physical and daily functioning 2.50 0.70 0.6–3.7 0.83

Scale 2: Satisfaction with family support 2.94 0.86 1.0–4.0 0.80

Scale 3: Emotional strain 2.31 0.75 0.3–4.0 0.76

Scale 4: Self-development 1.88 0.75 0.3–3.8 0.75

Scale 5: Well-being 2.61 0.58 0.3–4.0 0.70

Table 2 HRQOL in parentsof children suffering from renaldisease (ULQIE; n=195; rawscores ranging from 0–4)

a Cronbach’s α indicates the inter-nal consistency of psychometricscales; values range between 0 and1, values > 0.70 are acceptable

Treatment modality

HRQOL Conservativetherapy (n=30)

dialysis(n=32)

kidney graft(n=121)

F(2,175) p Significantdifferencea

ULQIE-total scale 2.65 2.33 2.52 2.40 0.094 n.s.

Scale 1: Physical and dailyfunctioning

2.67 2.29 2.53 2.82 0.062 n.s.

Scale 2: Satisfaction withfamily support

3.01 3.08 2.92 0.77 0.463 n.s.

Scale 3: Emotional strain 2.50 1.91 2.38 4.33 0.014 KG, CT > D

Scale 4: Self-development 2.07 1.60 1.91 3.48 0.033 CT > D, KG

Scale 5: Well-being 2.90 2.26 2.64 6.05 0.002 KG, CT > D

Table 3 HRQOL in parentsof children suffering from renaldisease (ULQIE; n=195; rawscores ranging from 0 to 4)

a Scheffé-test; CT conservativetherapy, D dialysis, KG kidney raft

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x SD Range Cronbach’s αa

Psychosocial strains (FaBel; range from 1 to 4)

Daily psychosocial strains 2.31 0.58 1.1–3.8 0.86

Siblings′ psychosocial strains 1.97 0.62 1.0–3.5 0.75

Financial burden 2.19 0.78 1.0–4.0 0.80

Emotional strains and worries concerning the future 2.46 0.58 1.0–4.0 0.51

Problems with coping 1.76 0.63 1.0–4.0 0.59

Coping (FKV; range from 1 to 5)

Depressive coping 2.20 0.88 1.0–5.0 0.79

Active, problem-focused coping 2.66 0.90 1.0–4.6 0.70

Distraction and self-confidence 2.56 0.83 1.0–4.6 0.75

Religiousness and search for meaning 2.79 0.88 1.0–5.0 0.65

Minimization and wishful thinking 2.03 0.98 1.0–5.0 0.74

Coping (SOEBEK; range from 1 to 6)

Improving marital relationship 4.29 1.08 1.0–6.0 0.90

Seeking social support 2.78 0.88 1.0–4.8 0.75

Focusing on the handicapped child 4.03 0.85 2.0–6.0 0.73

Self-acceptation and growth 3.40 0.89 1.0–5.2 0.74

Table 4 Parents’ psychosocialstrains and coping (n=195)

a Cronbach’s α indicates the inter-nal consistency of psychometricscales; values range between 0 and1, values > 0.70 are acceptable

Table 5 HRQOL, psychosocial strains, and coping in mothers and fathers of children suffering from renal disease (n=87 couples, pair-wisecomparisons)

Mothers (n=87) Fathers (n=87)

x SD x SD t(169) p sign. diff.

HRQOL (ULQIE; range from 1 to 4)

ULQIE-total scale 2.41 0.61 2.60 0.53 −1.73 0.086 n.s.

Scale 1: Physical and daily functioning 2.43 0.72 2.61 0.60 −1.73 0.086 n.s.

Scale 2: Satisfaction with family support 2.92 0.72 3.05 0.65 −1.27 0.206 n.s.

Scale 3: Emotional strain 2.21 0.85 2.48 0.83 −2.11 0.036 M < F

Scale 4: Self-development 1.89 0.75 1.96 0.74 −0.60 0.551 n.s.

Scale 5: Well-being 2.56 0.73 2.71 0.76 −1.28 0.202 n.s.

Psychosocial strains (FaBel; range from 1 to 4)

Daily psychosocial strains 2.37 0.63 2.20 0.50 1.90 0.060 n.s.

Siblings′ psychosocial strains 2.01 0.66 1.88 0.55 1.30 0.195 n.s.

Financial burden 2.23 0.79 2.04 0.71 1.62 0.106 n.s.

Emotional strains and worries concerning the future 2.52 0.56 2.32 0.57 2.39 0.018 M > F

Problems with coping 1.69 0.61 1.70 0.59 −0.10 0.919 n.s.

Coping (FKV; range from 1 to 5)

Depressive coping 2.32 0.88 2.01 0.81 2.31 0.022 M > F

Active, problem-focused coping 2.79 0.84 2.41 0.92 2.76 0.007 M > F

Distraction and self-confidence 2.71 0.80 2.37 0.83 2.61 0.010 M > F

Religiousness and search for meaning 2.97 0.77 2.52 0.94 3.35 0.001 M > F

Minimzation and wishful thinking 2.07 1.01 1.94 0.91 0.87 0.385 n.s.

Coping (SOEBEK; range from 1 to 6)

Improving marital relationship 4.35 1.05 4.41 0.83 −0.40 0.690 n.s.

Seeking social support 3.01 0.85 2.51 0.82 3.83 0.001 M > F

Focusing on the handicapped child 4.11 0.86 3.83 0.82 2.14 0.034 M > F

Self-acceptation and growth 3.48 0.92 3.35 0.85 0.94 0.350 n.s.

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reported a higher HRQOL. Furthermore, parents′ HRQOLwas predicted by the coping strategies “improving maritalrelationship” (β=0.24), “seeking social support” (β=−0.22)and “self-acceptation and growth” (β=0.19), all contributingto explained variance to a similar extent. Parents using theseways of coping experienced a higher HRQOL. A furtherpredictor was parent’s perceived limitation caused by theirchild’s illness in daily life (β=−0.15). Parents who perceivedtheir child to be less limited by illness in daily life,experienced a higher quality of life. Further sociodemo-graphic parameters, child’s age, and illness parameters didnot contribute to explained variance. All factors in sumexplained 57% of the total variance (see Table 7).

Discussion

The present study highlights the relationships betweenpsychosocial strains, ways of coping, and HRQOL inparents of children with chronic renal failure. In a quality-of-life assessment based on an instrument that was designed

for parents of chronically ill children, the parents ofchildren with chronic renal failure reached average scoresindicating a moderate HRQOL. While satisfaction with thefamily situation was pronounced, parents’ options for self-development were mostly limited. Adverse effects onHRQOL are comparable to those in parents of childrenwith juvenile idiopathic arthritis, type 1 diabetes, andhemophilia, whose quality of life was assessed with thesame instrument [25]. In contrast to other results [15], therewere some differences in HRQOL of parents caring forchildren with chronic renal failure due to child’s treatment,indicating that parents of children undergoing dialysisexperience more limitations in quality of life than parentsof children living with a kidney graft and parents ofchildren undergoing conservative treatment. Furthermore,mothers experienced diminished quality of life in compar-ison to fathers, possibly indicating a stronger need forpsychosocial care. The results of pair-wise comparisons ofparent’s HRQOL point to the higher emotional strain formothers, whereas parents of the same child did not differ inappreciating other aspects of HRQOL. Gender-specificlimitations in HRQOL were the same in parents of childrenwith other pediatric diseases [25]. Parents′ HRQOL wascorrelated with their subjective perception of their child’slimitation by illness in daily life, psychosocial strains, andways of coping.

On average, parents reported relatively low psychosocialstrains as a result of their child’s illness. This resultcontrasts with the findings from a recent qualitative studyshowing a higher level of strains reported by caregivers[11]. In the present study, the main sources of strain wereworries concerning the child’s future. This once againunderlines the importance of chronic sorrow experienced byparents of chronically ill children [26, 27]. In comparisonto parents of children undergoing conventional therapy orparents of children living with a kidney graft, the parents ofchildren undergoing dialysis experienced more daily psy-chosocial strains, reflecting the extraordinary burden of thistime-consuming therapy. According to previous results andconsistent with their role as primary caregivers, mothersreported a higher illness burden than did the fathers [10, 11].Pair-wise comparisons showed that within the families livingwith a child with chronic renal failure, mothers experiencedhigher emotional strains and worries concerning the futurethan did the fathers. Taken together with the findingsconcerning HRQOL, this means that the emotional burdenof the child’s disease is more pronounced for mothers.

Parents tried to cope with their child’s disease indifferent ways and used adaptive as well as non-adaptivecoping strategies; improving their partnership and focusingon the ill child were preferred ways of coping. This goesalong with previous findings regarding ways of coping inparents of children with renal diseases [12] and children

Table 6 Correlations of HRQOL with illness parameters, psychosocialstrains and coping (n=195)

Correlation withULQIE Pearson r

r p

Illness parameter

Duration of illness 0.12 0.126

Treatment modalitya 0.16 0.032

Perceived limitation caused by illness −0.33 0.0001

Psychosocial strains (FaBel)

Daily psychosocial strains −0.58 0.0001

Siblings′ psychosocial strains −0.40 0.0001

Financial burden −0.29 0.0001

Emotional strains and worriesconcerning the future

−0.49 0.0001

Problems with coping −0.12 0.099

Coping (FKV)

Depressive coping −0.64 0.0001

Active, problem-focused coping −0.26 0.0001

Distraction and self-confidence −0.24 0.002

Religiousness and search for meaning −0.16 0.030

Minimization and wishful thinking −0.43 0.0001

Coping (SOEBEK)

Improving marital relationship 0.33 0.0001

Seeking social support −0.08 0.268

Focusing on the handicapped child −0.59 0.0001

Self-acceptation and growth 0.38 0.0001

a Spearman r

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awaiting transplantation [28]. Parents of children undergoingdialysis reported coping more often in a depressive way andby seeking social support from others than did parents ofchildren with other treatment modalities, which may beinterpreted as a reaction to their challenging daily caresituation.Mothers reported using most of the coping strategiesmore often than fathers. This may be a consequence of facinga higher emotional burden due to the child’s disease. Anassessment of coping strategies used by parents of pediatrictransplant candidates also showed that mothers used moreengagement strategies (e.g. problem solving, emotionalexpression) than did fathers [28], underlining the importanceof screening ways of coping in both parents.

According to the present data, parents′ quality of life canbe predicted by the non-adaptive coping strategy offocusing on the ill child and the adaptive coping strategiesof improving their partnership, seeking social support, andself-acceptation. Thus, parents who are focusing on theirchild’s chronic renal failure without using adaptive ways ofcoping may be at risk of losses in HRQOL. Furthermore,there is a strong correlation between HRQOL and depres-sive coping, suggesting that this non-adaptive way ofcoping correlates with a poor outcome with regards toquality of life. Previous studies have pointed out thatpsychological intervention may successfully changeparents’ non-adaptive coping strategies [29]. In order toimprove parent’s HRQOL, this should be a major focus infuture intervention. In addition to parents′ coping strategies,their subjective appraisal of the child’s limitation in dailylife predicted their HRQOL. In contrast to this, objectiveillness parameters, such as duration of illness or treatmentmodality, did not contribute to variance in HRQOL scores.

This goes along with other study results which failed toindicate a relationship between child’s illness parametersand parents′ psychosocial outcome. For example, it wasshown that duration of dialysis was not different betweenparents with and without depression [9].

The interpretation of the present results is constricted bymethodological study limitations. The main shortcoming isthe poor rate of return (44.2%), which may be due to thefact that parents lacked the time for completing thequestionnaire because of their daily strains in the care oftheir chronically ill child. Because of the anonymous dataassessment, it was not possible to check whether studyparticipants differed from non-responders with respect tosociodemographic parameters such as age and educationalbackground. Even if the parameter values in the presentsample do not point to a systematic bias, a potential bias inresults cannot be excluded definitively. Therefore, therelationship between parents′ HRQOL and their psychoso-cial strains and coping strategies found in this study warrantfurther examination. Nonetheless, the present results delivera valuable insight into parents′ emotional states and well-being, which can be helpful in planning future studies.

Conclusions

We found that ways of coping predict HRQOL in parents ofchildren with chronic renal failure. Therefore, it seems to beuseful to monitor parents′ coping strategies, to use relevantscreening tools in order to explore parents′ ways of coping,and to offer psychological support when needed [9, 28, 30].For parents waiting for a child to receive a kidney transplant,

Table 7 Predictors of HRQOL in parents of children suffering from renal disease (n=195; results from a multiple regression analysis)

Independent variables β T p

Included variables

1. focusing on the child (SOEBEK) −0.25 −3.91 0.001

2. improving marital relationship (SOEBEK) 0.24 5.51 0.001

3. perceived limitation by illness in daily life −0.15 −2.55 0.013

4. seeking social support −0.22 −3.24 0.002

5. self-acceptation and growth 0.19 2.83 0.006

Multiple correlation Determination – pCoefficient Co-efficient

Model R=0.77 R2=0.57 21.99 0.001

Linear multiple regression: programme SPSS 15.0, procedure: regression, stepwise

Criterion: parents′ quality of life (ULQIE)

Independent variables:

Sociodemographic parameters: Parent’s age, gender, marital status and educational background, child’s age

Illness parameters: duration of illness, treatment modality

Psychological parameters: perceived limitation by illness in daily life, psychosocial strains (subscales FaBel), coping strategies (subscales FKVwithout “depressive coping”, subscales SOEBEK)

1484 Pediatr Nephrol (2010) 25:1477–1485

measures of parental stress and coping should be integratedinto routine standard pre-transplant evaluations [5]. Inaddition to this, the psychosocial situation of mothers shouldbe screened thoroughly because they experience higherpsychosocial strains and lower HRQOL than do fathers.This might also be useful in the case of parents of childrenundergoing dialysis, since they report the highest strains andthe lowest quality of life when compared to other treatmentgroups.

References

1. van der Heijden BJ, van Dijk PC, Verrier-Jones K, Jager KJ,Briggs JD (2004) Renal replacement therapy in children: datafrom 12 registries in Europe. Pediatr Nephrol 19:213–221

2. Lewis MA, Shaw J, Sinha M, Adalat S, Hussain F, Inward C(2009) UK renal registry 11th annual report. Nephron Clin Pract111(suppl 1):c257–c267

3. Aldridge MD (2008) How do families adjust to having a childwith chronic kidney failure? A systematic review. Nephrol Nurs J35:157–162

4. Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences ofparents who have children with chronic kidney disease: asystematic review of qualitative studies. Pediatrics 121:349–360

5. Zelikovsky N, Schast AP, Jean-Francois D (2007) Parent stressand coping: waiting for a child to receive a kidney transplant. JClin Psychol Med Settings 14:320–329

6. Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R,Robinson LA, Williams A, Pollock-Barziv SM (2010) Child andparental perspectives of multidimensional quality of life out-comes after kidney transplantation. Pediatr Transplant 14:249–256

7. Young GS, Libman Mintzer L, Seacord D, Castaneda M,Mesrkhani V, Stuber ML (2003) Symptoms of posttraumaticstress disorder in parents of transplant recipients: incidence,severity, and related factors. Pediatrics 111:725–731

8. Farley LM, DeMaso DR, D’Angelo E, Kinnamon C, Bastardi H,Hill CE, Blume ED, Logan DE (2007) Parenting stress andparental post-traumatic stress disorder in families after pediatricheart transplantation. J Heart Lung Transplant 26:120–126

9. Tsai TC, Liu SI, Tsai JD, Chou LH (2006) Psychosocial effects oncaregivers for children on chronic peritoneal dialysis. Kidney Int70:1983–1987

10. Heaton J, Noyes J, Sloper P, Shah R (2005) Families′ experiencesof caring for technology-dependent children: a temporal perspec-tive. Health Soc Care Community 13:441–450

11. de Paula ES, Nascimento LC, Rocha SM (2008) Roles assessmentin families of children with chronic renal failure on peritonealdialysis. Int J Nurs Pract 14:215–220

12. Cimete G (2002) Stress factors and coping strategies of parentswith children treated by hemodialysis: a qualitative study. JPediatr Nurs 17:297–306

13. Douglas JE, Hulson B, Trompeter RS (1998) Psycho-socialoutcome of parents and young children after renal transplantation.Child Care Health Dev 24:73–83

14. Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R,Varni JW (2006) Health-related quality of life in pediatric patientswith ESRD. Pediatr Nephrol 21:846–850

15. Chiu MC, Ng CF, Lee LP, Lai WM, Lau SC (2007) Automatedperitoneal dialysis in children and adolescents-benefits: a surveyof patients and parents on health-related quality of life. Perit DialInt 27:138–142

16. Goldstein SL, Rosburg NM, Warady BA, Seikaly M, McDonaldR, Limbers C, Varni JW (2009) Pediatric end stage renal diseasehealth-related quality of life differs by modality: a PedsQL ESRDanalysis. Pediatr Nephrol 24:1553–1560

17. Lai WM (2009) Quality of life in children with end-stage renaldisease: does treatment modality matter? Perit Dial Int 29:190–191

18. Rosenkranz J, Reichwald-Klugger E, Oh J, Turzer M, Mehls O,Schaefer F (2005) Psychosocial rehabilitation and satisfactionwith life in adults with childhood-onset of end-stage renal disease.Pediatr Nephrol 20:1288–1294

19. Ravens-Sieberer U, Morfeld M, Stein REK, Jessop DJ, BullingerM, Thyen U (2001) Der Familien-Belastungs-Fragebogen (FaBel-Fragebogen). Testung und Validierung der deutschen Version der“Impact on family scale” bei Familien mit behinderten Kindern.Psychother Psychosom Med Psychol 51:384–393

20. Krause MP, Petermann F (1998) Konstruktion einer Bewälti-gungsskala für Eltern behinderter Kinder (Soziale Orientierungenvon Eltern behinderter Kinder–SOEBEK). Kindheit undEntwicklung 7:112–120

21. Muthny FA (1989) FKV–Freiburger Fragebogen zur Krankheits-verarbeitung. Manual, Hogrefe Verlag, Göttingen

22. Goldbeck L, Storck M (2002) Das Ulmer Lebensqualitäts-Inventarfür Eltern chronisch kranker Kinder (ULQIE): entwicklung undpsychometrische Eigenschaften. Z Klin Psychol Psychother31:31–39

23. Goldbeck L (2006) The impact of newly diagnosed chronicpaediatric conditions on parental quality of life. Qual Life Res15:1121–1131

24. Frei U, Schober-Halstenberg HJ (2008) Nierenersatztherapie inDeutschland. QuaSi Niere gGmbH, Berlin

25. Wiedebusch S, Muthny FA (2009) Eltern von chronisch krankenKindern. Lebensqualität, psychosoziale Belastungen und Bed-ürfnisse. Monatsschr Kinderheilkd 157:903–910

26. Burke ML, Eakes GG, Hainsworth MA (1999) Milestones ofchronic sorrow: perspectives of chronically ill and bereavedpersons and family caregivers. J Fam Nurs 5:374–387

27. Roos S (2002) Chronic sorrow: a living loss. Brunner-Routledge,New York

28. Simons L, Ingerski LM, Janicke DM (2007) Social support,coping, and psychological distress in mothers and fathers ofpediatric transplant candidates: a pilot study. Pediatr Transplant11:781–787

29. Bottos AM, Zanon E, Sartori MT, Girolami A (2007) Psycholog-ical aspects and coping styles of parents with heamophilic childundergoing a programme of counselling and psychologicalsupport. Haemophilia 13:305–310

30. Friedman AL (2006) The broader burden of end-stage renaldisease on children and their families. Kidney Int 70:1893–1894

Pediatr Nephrol (2010) 25:1477–1485 1485