Comparing stress levels of parents of children with cancer and parents of children with physical disabilities

PSYCHO-ONCOLOGY

Psycho-Oncology 13: 898–903 (2004)Published online 20 October 2004 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.868

BRIEF REPORT

COMPARING STRESS LEVELS OF PARENTS OFCHILDREN WITH CANCER AND PARENTS OFCHILDREN WITH PHYSICAL DISABILITIES

JEN WEN HUNGa, YEE-HWA WUa and CHAO-HSING YEHb,*aRehabilitation Department, Chang Gung Memorial Hospital, Kaohsiung, Taiwan, Republic of China

bGraduate School of Nursing, Chang Gung University, Taiwan, Republic of China

SUMMARY

Aim: To evaluate whether parental stress differs between parents of children with physical disabilities and parents ofchildren with cancer.Methods: Parents (92 with disabled children and 89 with children with cancer) were recruited to complete the

measures of the Parenting Stress Index/Short Form.Results: Diagnostic group differences were found across the parenting stress measures used in this study. The

parents of children with cancer experienced significantly higher levels of stress compared with the parents of disabledchildren. The mean scores of each subscale (PD, PCDI, and DC) and total score scales in both groups approachedwere above the 90th percentile of Abidin’s normative sample (PD ¼ 36, PCDI ¼ 27, DC ¼ 36, Total ¼ 91), exceptfor the PD and DC subscales in the disabled children group, which approached the 90th percentile.Conclusion: The results of the study suggest that most of the parents in our sample should be referred for more in-

depth diagnostic study and professional counseling in stress management. Therefore, a normative score on the PSI/SF for Taiwanese parents with healthy children should be established to identify whether differences exist betweenparents whose children are healthy and those whose children have been diagnosed with a chronic illness. Copyright# 2004 John Wiley & Sons, Ltd.

INTRODUCTION

Parental stress has been shown to be a significantproblem in many different circumstances, particu-larly when parents have a child with a chronicillness. Studies have shown that parents endurehigh levels of stress while caring for children whoare preterm (Singer et al., 1999; Ong et al., 2001)and children who have disabilities (Oka and Ueda,1998), head injury (Sander et al., 1997), or cancer(Yeh, 2003). Although several investigations(Wallander et al., 1989, 1990, 1995) have usedstandardized measures to evaluate the stress levelsof parents of children with physical disabilities or

cancer (Yeh, 2002a), no study has compared thestress levels of parents of children with one of twochronic illnesses that have different illness char-acteristics, such as physical disabilities and cancer.Recent findings suggest that children with differenttypes of chronic illnesses have similar behavioraland emotional patterns (Wiegner and Donders,2000), but this possibility has not yet beenexplored at the parental stress level.

Noncategorical conceptual definitions of condi-tions of children with chronic illness have beenused (Stein et al., 1993) to evaluate the conse-quences of health outcomes as well as facilitatecross-disciplinary work in examining the effects ofpsychological and social variables on children andfamilies. Quantifying parental distress is thecornerstone of early identification and diagnosticassessment, and measuring intervention effective-ness and other psychological outcomes. A com-monly used instrument in pediatric settings is the

Received 1 March 2004Copyright # 2004 John Wiley & Sons, Ltd. Accepted 31 August 2004

*Correspondence to: Chang Gung University, GraduateInstitute of Nursing Science, 259 Wen-Hwa 1 Rd, Kwei-San,Tao-Yuen, Taiwan, Republic of China. E-mail: [email protected]

Parental Stress Index (PSI) (Abidin, 1983, 1995a).The PSI quantifies parenting stress based on theinterrelationship between the child’s and theparents’ characteristics, which are measured by 120items (54 items related to the parents, 47 to the child,and 19 to life stress). In clinical settings, a simplifiedPSI (PSI/SF) is often used instead of the full versionto expedite the administration of the questionnaires.The PSI/SF, consisting of 36 Likert-type items, canbe completed in less than 10min (Abidin, 1995b),whereas a full PSI contains 120 items and requires20min to complete. Studies have shown the 36-itemPSI/SF to be adequate in describing the primarycomponents of the parent–child system and to havegood internal consistency (Castaldi, 1990; Solis andAbidin, 1991; Yeh et al., 2001).

The objectives of this study were to determinewhether any differences in parenting stress pat-terns (such as parental distress, parent–childrendysfunctional distress, and difficult child) existbetween parents of children with cancer andparents of children with physical disabilities.

METHODSSample

Eligible subjects included parents of pediatricpatients with a disability or cancer. Patients whoregularly visited the outpatient clinic and were lessthan 18 years old were recruited for the study. Inorder to compare the stress levels of parents ofchildren within the two illness groups withouthaving to take into consideration the develop-mental differences of the children, patients fromthe cancer and disability groups were age matched.Subjects were excluded from the disabled group ifthey had concurrent unrelated major medicalconditions because major medical conditionscould have an additional influence on parentalstress. The cancer group included only patientswho were currently receiving treatment to avoidthe influences of disease diagnosis and treatmentoutcomes on parenting stress.

Characteristics of the patients

A total of 181 patients (89 in the cancer groupand 92 in the disability group) were recruited toparticipate in this study. The cancer group consistedof 55 boys and 34 girls who were between 1 and 15years old (mean ¼ 5, S:D: ¼ 3:2); 77 (86.5%) werenewly diagnosed and receiving treatment, and 12

(13.5%) were receiving treatment for relapses. Theircancer diagnoses included leukemia (49, 55.1%),lymphoma (5, 5.6%), and other solid tumors (35,39.3%). In calculating the types of treatmentreceived by the patients, current as well as pasttreatments were included. The treatments receivedby patients included chemotherapy (87, 97.8%),radiation (16, 18.0%), and surgery (34, 38.2%).Thirty-two (36.0%) patients received at least onealternative therapy. Most patients received morethan one type of treatment simultaneously.

The disability group included 56 boys and 36girls who were between 1 and 15 years old(mean ¼ 4:97, S:D: ¼ 3:45). Their diagnoses in-cluded cerebral palsy (n ¼ 76), spinal bifida(n ¼ 2), arthrogryposis multiplex (n ¼ 8), andother congenital or acquired physical disabilities(n ¼ 6). The duration of time for parents learningof their child’s diagnosis was 42.33 months(S:D: ¼ 36:51, range ¼ 1–171). The locomotiveability of children with disabilities was as follows:28 could walk independently, 16 could walk withdevices, and 48 were wheel-chair bound.

Characteristics of the parents

The demographic characteristics of the parentsare summarized in Table 1. Parents in the cancergroup had a mean age of 33.1 years (S:D: ¼ 5:2,range ¼ 19–45) and a mean education level of 11.8years (S:D: ¼ 2:6, range ¼ 6–16). Eighty-four par-ents (94%) were married, and the mean number ofchildren in the house was 2.2 (S:D: ¼ 0:9). Most ofthe primary caregivers were mothers (83%). Familyincomes were primarily earned by the fathers (69%),followed by the mothers (3%), both parents (27%),and others (1%). Parents in the cancer group hadstronger religious beliefs (80%) than did parents inthe disability group (73%). Parents in the disabilitygroup (n ¼ 92) had a mean age of 34.51 years(S:D: ¼ 6:56, range ¼23–49) and a mean educationlevel of 12.66 years (S:D: ¼ 2:87, range ¼ 6–18).Most parents (n ¼ 90, 98%) were married, and themean number of children in a household was 2.05(S:D: ¼ 0:91). Primary caregivers were mothers(63%), fathers (2%), both parents (25%), andothers (10%) (i.e. grandparents and babysitters).Family incomes were primarily earned by thefathers (75%), followed by the mothers (6%), bothparents (17%), and others (2%). Sixty-seven (73%)parents had strong religious beliefs that includedBuddhism, Taoism, and others.

PARENTAL STRESS LEVELS BETWEEN CHILDREN WITH PHYSICAL DISABILITY AND CANCER 899

Copyright # 2004 John Wiley & Sons, Ltd. Psycho-Oncology 13: 898–903 (2004)

MEASURES

Parental stress index/short form (PSI/SF)

The PSI/SF was developed by Abidin (1983,1995a,b), and a Chinese version of the PSI/SF wasobtained from Psychological Assessment Re-

sources, Inc. (Abidin,1995a,b). The PSI/SF con-sists of three subscales and a total stress score. Thethree subscales are parental distress, parent–childdysfunctional distress, and difficult child. Parentaldistress (PD), with a set of 12 items, measuresdistress directly related to parenting a sick child,and, more specifically, an impaired sense ofparenting competence, restrictions on other liferoles, conflicts with the child’s other parent, lackof social support, and the presence of depression.Parent–child dysfunctional interaction (PCDI),with a set of 12 items, measures the parent’sperception that his/her child does not meet theparent’s expectations and that the interactionswith his/her child are not reinforcing to him orher as a parent. The Difficult child (DC), with a setof 12 items, measures the basic behavioralcharacteristics of children that make them eithereasy or difficult to manage. All of the items weremeasured on a 5-point Likert scale (1 ¼ stronglyagree to 5 ¼ strongly disagree). Higher scoresindicated the higher perceived stress of the parents.One study has shown the Chinese version of thePSI/SF to have a good reliability (internalconsistency coefficient>0.78) and construct valid-ity (goodness-of-fit in 3-factor structure) (Yehet al., 2001).

The following information was also obtained:the child’s age, gender, and diagnosis, and theparent’s age, education level, occupational status,religious beliefs, marital status, and number ofsiblings of the children.

Procedures

Approval for the study of human subjects wasobtained from the Institutional Review Board ofChang Gung Hospital prior to the study. Thehospital’s established procedures for protectingconfidentiality were strictly followed. Eligibleparents were approached by trained data collec-tors. A brief introduction to the purpose andprocedures of the study was given to subjectsbefore recruiting them for the study. Afterinformed consent had been obtained, a question-naire package was distributed to each subject,including the PSI/SF and a demographic survey.

Statistical analysis

Descriptive data analysis was used to determinethe demographic characteristics of the subjects.

Table 1. Demographic characteristics of the parents

Variable Disability Cancer

N (92) (%) N (89) (%)

Age

Mean (S.D.) (range) 34.51 (6.56) (23–49) 33.1 (5.2) (19–45)

Marital status

Married 90 98 84 94

Divorced/

separated

2 2 4 5

Widowed 0 0 1 1

Single 0 0 0 0

Years of education

0–6 1 1 5 6

7–9 18 19 17 19

10–12 53 58 46 52

13–16 19 21 21 24

>16 1 1 0 0

Religious beliefs

Yes 67 73 71 80

No 25 27 18 20

Primary caregiver

Mother 58 63 74 83

Father 2 2 8 9

Both parents 23 25 2 2

Other 9 10 4 4

Children in a household

Mean (S.D.) 2.05(0.91) 2.23(0.87)

1 26 28 16 18

2 42 46 42 47

3 19 21 27 30

4 3 3 3 3

5 2 2 0 0

6 0 0 1 1

Family income

Father 69 75 61 69

Mother 5 6 0 0

Both parents 16 17 3 3

Other 2 2 25 28

N varies due to missing data.

J.W. HUNG ET AL.900


Before further data analysis, the normality of thedata distribution in each scale was checked. Theinternal consistency of each scale was examinedusing Cronbach’s alpha. Reliability of 0.70 orbetter was considered acceptable (Cronbach,1951). T tests were used to compare differencesin parental stress between the disability and cancergroups.

RESULTS

Differences in parenting stress between groups

Table 2 shows the internal consistency ofCronbach’s alpha and descriptive data for eachsubscale and the total scale. The instrument’sinternal consistencies in each subscale and the totalscale were all equal to or greater than 0.8 in thepresent study. Table 2 reports the results of the ttests that compared parental stress between thedisability group and the cancer group. Parents ofchildren with cancer reported significantly higherlevels of stress than did the parents of disabledchildren. The PSI total score of the disabilitygroup (Mean ¼ 97:11, S:D: ¼ 20:70) was statisti-cally significantly lower than that of the cancergroup (Mean ¼ 118:53, S:D: ¼ 19:70). In addition,the PD subscale of the PSI was statisticallysignificantly lower in the disability group(Mean ¼ 34:54, S:D: ¼ 8:72) than in the cancergroup (Mean ¼ 37:21, S:D: ¼ 7:59). The PCDIsubscale of the PSI was statistically significantlylower in the disability group (Mean ¼ 30:16,S:D: ¼ 7:41) than in the cancer group(Mean ¼ 45:21, S:D: ¼ 7:96). The DC subscale ofthe PSI was statistically significantly lower in thedisability group (Mean ¼ 32:43, S:D: ¼ 7:22) than

in the cancer group (Mean ¼ 36:12, S:D: ¼ 7:03),as shown in Table 2.

In order to further examine whether differencesin parenting stress were due to demographicdifferences between the groups, each of thepossible confounding variables (child’s, mother’sand father’s age, mother’s and father’s levels ofeducation, and highest socioeconomic status) wereconsidered. There were no statistically significantdifferences among these confounding variables.

DISCUSSION

This is the first study to compare the stress levels ofparents of children with different chronic illnesses.Diagnostic group differences were found across theparenting stress measures used in this study. Theparents of children with cancer had significantlyhigher levels of stress than did the parents ofdisabled children.

Before interpreting the study findings, thepotential limitations of this study should beconsidered. We relied exclusively on self-reportedmeasures that were completed mostly by one of theparents. In addition, the participants in this studywere the families of children who were receivingroutine medical care or rehabilitation at outpatientclinics and therefore may not be completelyrepresentative of the population of families withchildren who have disabilities or cancer, especiallythose with minimal medical care needs or compli-cations, or those who have completed cancertreatment. In addition, individual factors, such asparents or the couple interactions within parents,and coping strategies are not investigated.

Group differences were observed with respect toall of the PSI/SF subscales; parents of children

Table 2. Internal consistency of Cronbach’s alpha and descriptive data for each subscale and the total scale for the disability and

cancer groups

Scale Disability group Cancer group

M (S.D.) a M (S.D.) a t

PD 34.54 (8.72) 0.88 37.21(7.59) 0.83 2.16�

PCDI 30.16 (7.41) 0.84 45.21(7.96) 0.88 13.10��

DC 32.43 (7.22) 0.83 36.12(7.03) 0.80 3.49��

PSITOT 97.11 (20.71) 0.93 118.53(19.70) 0.85 6.92��

PD ¼ parental distress; DI ¼ parent–child dysfunctional interaction; DC ¼ difficult child; PSITOT ¼ total parenting stress index,M ¼ Mean; S:D: ¼ Standard deviation; t ¼ t test.*p50.05; **p50.01; ***p50.001



with cancer reported significantly higher scoresthan did parents of disabled children. Thesedifferences may be due to the actual differencesin the characteristics of the two illnesses. Specifi-cally, children with physical limitations or dis-abilities live longer than do children with cancer.Unlike cerebral palsy, spinal bifida, and otherdisabling conditions in which the phase ofrecovery begins at a certain point of time afterinitial onset, cancer has an unpredictablecourse that involves an initial period of illnessfollowed by remission and the possibility ofreoccurrence in the future. It is possible thatdifferences in the course of the disease will affectparents differently, since, in general, these differ-ences affect the children’s physical and psycholo-gical functioning, thereby affecting manydimensions of parenting stress.

There were more significant differences betweenparents in the cancer and disability groups in thePCDI and DC subscales of the PSI than in the PDsubscale. These findings suggest that parents in thecancer group perceived more stress from parent–child interactions and the children’s characteris-tics. Similarly, our previous qualitative study (Yeh,2002b) found there to be different illness char-acteristics between cancer and disability groups.For example, parents perceived cancer as a ‘deadlydisease’ and thought their children were ‘tooyoung to understand’ and therefore were reluctantto discuss the illness with their ill children.Concealing information or knowledge aboutcancer and avoiding negative reactions in frontof their children were the most common strategiesused by parents in the communication of illnessinformation between parents and children withcancer (Yeh, 2002b). Children knew there wassomething wrong with them even though they hadlittle discussion about their illness with others. Thelack of communication about their illness con-tinued throughout their treatment, even whenparents had to watch the sick child suffer throughinvasive treatments and side effects, which createda tremendous amount of stress for the parents.Consequently, the children created their ownperceptions and ideas about their illness by usingtheir imaginations.

Whereas children with cancer can hide theirillness, the physically disabilities of disabledchildren are visible for all to see. Therefore,parents of children with physical disabilities facea different type of stress and different demandsthan do parents of children with cancer. Consis-

tent with findings in the literature, Johnson andDeitz (1985) found that mothers of physicallyhandicapped children had difficulty leaving thehome to participate in social activities. It wasassumed that the time demand placed on a mothercaring for a disabled child interfered with themother’s ability to leave home and engage in otheractivities. This may explain why parents withdisabled children had high scores on the PDsubscale.

The mean scores of each subscale (i.e. PD,PCDI, and DC) and the total scales scoreapproached or were above the 90th percentile ofAbidin’s normative sample (PD ¼ 36, PCDI ¼ 27,DC ¼ 36, Total ¼ 91) (Abidin, 1995b), except forthe subscales PD and DC in the disability group,which approached the 90th percentile. Thesescores, compared with the normative scores ofWestern countries, suggest that most of theparents in our sample should be referred for morein-depth diagnostic study and professional coun-seling in stress management. Therefore, it isessential to establish a normative score for thePSI/SF in Taiwanese parents with healthy childrenin order to identify whether differences existbetween parents whose children are healthy andthose whose children have been diagnosed with achronic illness.

To our knowledge, this is the first study toevaluate the stress levels of parents of childrenwith disabilities and parents of children withcancer. Parents of children with a chronic illnessare in great need of professional counseling. Withthe increasing awareness of the importance ofquality of life, the healthcare system needs to gobeyond disease treatment and expand to addressindividual psychological burden. Healthcare pro-fessionals should provide care for the psychosocialneeds of patients and their parents to ensure theirability to cope with the chronic illness. A long-itudinal study design would have yielded valuableinformation on the changes in stress with time andthe impact of parenting stress on the long-termoutcomes of these children (Cronin et al., 1995;Miceli et al., 2000).

ACKNOWLEDGEMENTS

This research was supported by a grant to Dr Yeh fromChang Gung University, Taiwan, Republic of China(CMRP1272) and National Science Council (NSC91-2314-B-182-076).

J.W. HUNG ET AL.902


REFERENCES

Abidin RR. 1983. Parenting Stress Index}Manual(Form 6). Pediatric Psychology: Charlottesville.

Abidin RR. 1995a. Parenting Stress Index}Manual (3rdedn). Psychological Assessment Resources: Odessa.

Abidin RR. 1995b. Parenting Stress Index /ShortForm}Manual. Psychological Assessment Resources:Odessa.

Castaldi J. 1990. Affective and cognitive patterns in theparent–child relationship during the second year oflife. Unpublished, Doctoral Dissertation, University ofVirginia: Charlotteville.

Cronbach LJ. 1951. Coefficient alpha and internalstructure of tests. Psychometrika 16: 297–334.

Cronin CM, Shapiro CR, Casiro OG, Cheang MS,1995. The impact of very low birth weight infants onthe family is long lasting: A matched control study.Arch Pediatr Adolesc Med 149: 151–158.

Johnson CB, Deitz JC. 1985. Activity patterns ofmothers of handicapped children. Phys Occup TherPediatr 5: 17–25.

Miceli PJ, Goeke-Morey MC, Whitman TL, KolbergKS, Miller-Loncar C, White RD. 2000. Brief report.Birth status, medical complications, and socialenvironment: Individual differences in developmentof preterm very low birth weight infants. J PediatrPsychol 25: 353–358.

Oka S, Ueda R. 1998. Stress, emotional support andcoping behavior of mothers with disabled pre-schoolchildren–mothers at outpatient department. J MedDent Sci 45: 185–193.

Ong L, Chandran V, Boo NY. 2001. Comparison ofparenting stress between Malaysian mothers of four-year-old very low birth weight and normal birthweight children. Acta Paediatr 90: 1464–1469.

Sander AM, High WM Jr., Hannay HJ, Sherer M. 1997.Predictors of psychological health in caregiversof patients with closed head injury. Brain Inj 11:235–249.

Singer LT, Salvator A, Guo S, Collin M, Lilien L,Baley J. 1999. Maternal psychological distress andparenting stress after the birth of a very low-birth-weight infant. J Am Med Assoc 281: 799–805.

Solis ML, Abidin RR. 1991. The Spanish version of theparenting stress index: A psychometric study. J ClinChild Psychol 20: 372–378.

Stein RE, Bauman LJ, Westbrook LE, Coupey SM,Ireys HT. 1993. Framework for identifying childrenwho have chronic conditions: The case for a newdefinition. Journal of Paediatrics 122: 342–347.

Wallander JL, Varni JW, Babani L, Banis HT, DeHaanCB, Wilcox KT. 1989. Disability parameters, chronicstrain, and adaptation of physically handicappedchildren and their mothers. J Pediatr Psychol 14:23–42.

Wallander JL, Pitt LC, Mellins CA. 1990. Childfunctional independence and maternal psychosocialstress as risk factors threatening adaptation inmothers of physically or sensorially handicappedchildren. J Consult Clin Psychol 58: 818–824.

Wallander JL, Venters TL. 1995. Perceived role restric-tion and adjustment of mothers of children withchronic physical disability. J Pediatr Psychol 20:619–632.

Wiegner S, Donders J. 2000. Predictors of parentaldistress after congenital disabilities. J Dev BehavPediatr 21: 271–277.

Yeh CH, Chen ML, Li W, Chuang HL. 2001. TheChinese version of the parenting stress index: Apsychometric study. Acta Paediatr 90: 1470–1477.

Yeh CH. 2002a. Pediatric Oncology: Gender differencesreported on measures of parental distress. J Adv Nurs38(6): 598–606.

Yeh CH. 2002b. Life experience of Taiwaneseadolescents with cancer. Scand J Car Sci 16:232–239.

Yeh CH. 2003. Psychological distress: Testing hypoth-eses based on Ray’s adaptation model. Nurs Sci Quart16(3): 255–263.



Documents

Comparing stress levels of parents of children with cancer and parents of children with physical disabilities