the function of parents and their children with cerebral palsy

7
Original Research The Function of Parents and Their Children With Cerebral Palsy Nancy Murphy, MD, Deidre A. Caplin, PhD, Becky J. Christian, PhD, RN, Brenda L. Luther, PhD, MS, RN, Richard Holobkov, PhD, Paul C. Young, MD Objective: To determine associations between the function of parents and that of their children with cerebral palsy (CP) and the influence of the levels of the child’s impairment, parenting stress, parent self-efficacy, and family functioning. Design: Descriptive correlational cross-sectional survey. Setting: Academic tertiary care children’s hospital and pediatric specialty orthopedic hospital in the intermountain West. Participants: A total of 51 parents or guardians who provide the majority of daily care in their homes for their children with CP between the ages of 5 and 18 years. Methods: Survey of a convenience sample of parents of children with CP. Main Outcome Measurements: (1) Short-form 36 Health Survey v2.0 to measure parent mental and physical health; (2) Pediatric Quality of Life Inventory v4.0 to measure the physical, social, school, emotional and psychosocial function, and total quality of life of their children with CP; (3) Gross Motor Function Classification System to assess severity of the child’s CP; (4) Parenting Stress Index; (5) Family Environment Scale, relationship dimension; and (6) Self-Efficacy for Parenting Tasks Index. Results: Positive correlations were found between parent physical health and the physical function of their children with CP (r 0.32) and between parent mental health and the emotional function (r 0.46), psychosocial function (r 0.40), and total health-related quality of life (r 0.38) of their children. When adjusting for severity of CP, we found that parenting stress and parenting self-efficacy attenuated these relationships to varying de- grees. Conclusions: A clear positive correlation was found between the function of parents and the function of their children with CP. Although a cross-sectional study does not demon- strate the direction of the relationship, it seems reasonable to conclude that clinicians who are attempting to directly maximize child function should also consider the potential value of interventions that support and improve parent function, particularly mental health. PM R 2011;3:98-104 INTRODUCTION Maximizing the function of children with disabilities is a goal of everyone involved in their care. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) conceptualizes the complex and dynamic relationship between the degree of a child’s impairment and his or her level of function as being influenced by personal and environmental factors [1]. For most children with disabil- ities, a critical environmental factor is the care provided by their parents (or caregivers). Current systems of care for children with disabilities depend on parents being not only willing but also physically and emotionally able to meet the challenges of providing care for their children. However, there is evidence that parents of children with disabilities are in poorer emotional and physical health than parents of typically developing children [2-5]. For example, parents of children with cerebral palsy (CP) report more chronic physical conditions, such as headaches, stomach/intestinal ulcers, and greater overall distress compared with other parents [6]. If a parent is unable to meet the N.M. Department of Pediatrics, University of Utah School of Medicine, PO Box 581289, Salt Lake City, UT 84158. .Address correspondence to N.M.; e-mail: [email protected] Disclosure: nothing to disclose D.A.C. Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT. Disclosure: nothing to disclose B.J.C. School of Nursing, University of Ala- bama at Birmingham, Birmingham, AL. Disclosure: nothing to disclose B.L.L. Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT. Disclosure: nothing to disclose R.H. Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT. Disclosure: nothing to disclose P.C.Y. Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT. Disclosure: nothing to disclose Submitted for publication January 19, 2010; accepted November 13, 2010. PM&R © 2011 by the American Academy of Physical Medicine and Rehabilitation 1934-1482/11/$36.00 Vol. 3, 98-104, February 2011 Printed in U.S.A. DOI: 10.1016/j.pmrj.2010.11.006 98

Upload: nancy-murphy

Post on 28-Nov-2016

213 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: The Function of Parents and Their Children With Cerebral Palsy

hP

Original Research

The Function of Parents and Their Children WithCerebral PalsyNancy Murphy, MD, Deidre A. Caplin, PhD, Becky J. Christian, PhD, RN,

Brenda L. Luther, PhD, MS, RN, Richard Holobkov, PhD, Paul C. Young, MD

Objective: To determine associations between the function of parents and that of theirchildren with cerebral palsy (CP) and the influence of the levels of the child’s impairment,parenting stress, parent self-efficacy, and family functioning.Design: Descriptive correlational cross-sectional survey.Setting: Academic tertiary care children’s hospital and pediatric specialty orthopedic

ospital in the intermountain West.articipants: A total of 51 parents or guardians who provide the majority of daily care in

their homes for their children with CP between the ages of 5 and 18 years.Methods: Survey of a convenience sample of parents of children with CP.Main Outcome Measurements: (1) Short-form 36 Health Survey v2.0 to measureparent mental and physical health; (2) Pediatric Quality of Life Inventory v4.0 to measurethe physical, social, school, emotional and psychosocial function, and total quality of life oftheir children with CP; (3) Gross Motor Function Classification System to assess severity ofthe child’s CP; (4) Parenting Stress Index; (5) Family Environment Scale, relationshipdimension; and (6) Self-Efficacy for Parenting Tasks Index.Results: Positive correlations were found between parent physical health and the physicalfunction of their children with CP (r � 0.32) and between parent mental health and theemotional function (r � 0.46), psychosocial function (r � 0.40), and total health-relatedquality of life (r � 0.38) of their children. When adjusting for severity of CP, we found thatparenting stress and parenting self-efficacy attenuated these relationships to varying de-grees.Conclusions: A clear positive correlation was found between the function of parents andthe function of their children with CP. Although a cross-sectional study does not demon-strate the direction of the relationship, it seems reasonable to conclude that clinicians whoare attempting to directly maximize child function should also consider the potential valueof interventions that support and improve parent function, particularly mental health.

PM R 2011;3:98-104

INTRODUCTION

Maximizing the function of children with disabilities is a goal of everyone involved intheir care. The World Health Organization’s International Classification of Functioning,Disability and Health (ICF) conceptualizes the complex and dynamic relationshipbetween the degree of a child’s impairment and his or her level of function as beinginfluenced by personal and environmental factors [1]. For most children with disabil-ities, a critical environmental factor is the care provided by their parents (or caregivers).Current systems of care for children with disabilities depend on parents being not onlywilling but also physically and emotionally able to meet the challenges of providing carefor their children. However, there is evidence that parents of children with disabilitiesare in poorer emotional and physical health than parents of typically developingchildren [2-5]. For example, parents of children with cerebral palsy (CP) report morechronic physical conditions, such as headaches, stomach/intestinal ulcers, and greater

overall distress compared with other parents [6]. If a parent is unable to meet the

PM&R © 2011 by the American Academy of P1934-1482/11/$36.00

Printed in U.S.A.98

N.M. Department of Pediatrics, University ofUtah School of Medicine, PO Box 581289, SaltLake City, UT 84158. .Address correspondenceto N.M.; e-mail: [email protected]: nothing to disclose

D.A.C. Department of Pediatrics, University ofUtah School of Medicine, Salt Lake City, UT.Disclosure: nothing to disclose

B.J.C. School of Nursing, University of Ala-bama at Birmingham, Birmingham, AL.Disclosure: nothing to disclose

B.L.L. Department of Pediatrics, University ofUtah School of Medicine, Salt Lake City, UT.Disclosure: nothing to disclose

R.H. Department of Pediatrics, University ofUtah School of Medicine, Salt Lake City, UT.Disclosure: nothing to disclose

P.C.Y. Department of Pediatrics, University ofUtah School of Medicine, Salt Lake City, UT.Disclosure: nothing to disclose

Submitted for publication January 19, 2010;accepted November 13, 2010.

hysical Medicine and RehabilitationVol. 3, 98-104, February 2011

DOI: 10.1016/j.pmrj.2010.11.006

Page 2: The Function of Parents and Their Children With Cerebral Palsy

ifwsptspdttf

Pcidtlrscg

99PM&R Vol. 3, Iss. 2, 2011

challenges of providing care for a child because of poorphysical or emotional health, the child may not achieve ashigh a level of function as he/she is capable.

The current health care system creates caregiving expecta-tions, but it may not address caregiver needs. If community-based and family-centered care initiatives for children withdisabilities are to be successful, they should include interven-tions that support and sustain parents in their roles as long-term caregivers. Identifying protective and risk factorsamong parents of children with disabilities is a critical steptoward providing appropriate services in a proactive manner.

In this study, by using CP as a prototype of childhooddisability in the context of the ICF, we studied the relation-ship between parent function, determined by a broad mea-sure of parental health, and child function, reflected by thechild’s physical, social, school, emotional, and psychosocialfunction, and the child’s overall health-related quality of life.We chose CP as a prototype of childhood disability because itis often associated with complex multidimensional func-tional impairments leading to long-term care needs thatexceed those of typically developing children. CP is com-posed of a heterogeneous group of neurodevelopmental dis-orders, ranging from mild motor difficulties to an array ofcomplex developmental and functional disabilities in chil-dren with more severe CP [3]. Parents of children with CP arelikely to experience significant variability in caregiving de-mands and expectations [6]. Thus, the results of this studyare likely applicable to parents of children with a variety ofother physical disabilities secondary to nondegenerative con-ditions.

On the basis of the research of Raina et al [5], whodentified child behavior, caregiving demands, and familyunction as the most important predictors of the health andell-being of parents of children with CP, we included parent

tress, family environment, and parenting self-efficacy asotential mediators or confounders of the relationship be-ween parent and child health and function. We hypothe-ized that there would be a positive relationship betweenarent function and child function, and that there would beirect and indirect effects on this relationship attenuated byhe following: (1) the degree of the child’s impairment; (2)he level of parent stress; (3) the parents’ self efficacy; and (4)amily functioning.

METHODS

The University of Utah Institutional Review Board approvedthis study.

Participants

We invited primary caregivers of children between 5 and 18years with CP to participate. Primary caregivers were defined

as either a parent or another person who had provided the o

majority of daily care for the child in their home for at leastthe past year. We selected the 5- to 18-year age range becausetypically developing children approach functional indepen-dence and school readiness by age 5, whereas those with CPare likely to continue to be dependent, thus emphasizing thedifferences in parenting requirements [7]. Participants wererecruited from a 233-bed tertiary care children’s hospital thatserves 5 states in the intermountain West (Montana, Idaho,Wyoming, Nevada, and Utah), as well as from a 40-bedspecialty orthopedic surgery hospital that serves children andfamilies of culturally diverse backgrounds from both theintermountain region and other countries.

After providing written informed consent, each partici-pant completed a demographic questionnaire and 6 surveys.The surveys were typically completed in 70 minutes. Thoseunable to read or speak English completed the surveys byeither a telephone or face-to-face interview, with an inter-preter. Participants received $25 grocery gift cards for theirtime and effort.

Measures

The survey instruments included the following: (1) theShort-Form 36 Health Survey v.2.0 (SF-36) to measure par-ent function; (2) the Pediatric Quality of Life Inventory v.4.0(PedsQL 4.0) to measure child function; (3) the Gross MotorFunction Classification System (GMFCS) to measure theseverity of the child’s disability; (4) the Parenting Stress Index(PSI); (5) the Family Environment Scale–Relationship Di-mension (FES) to measure family function; and (6) the Self-Efficacy for Parenting Tasks Index (SEPTI). The SF-36 is awell-validated, self-report instrument that profiles the phys-ical function, role-physical, general health, vitality, socialfunction, role-emotional, and mental health of adults; phys-ical and mental component scores summarize results [8]. ThePedsQL 4.0 is a 30-item tool that provides an assessment (viaself-report or parent-proxy) of physical, social, scholastic,and emotional function and generates psychosocial healthsum scores and total scale scores for children 2 to 18 years[9,10]. The GMFCS quantifies the degree of motor involve-ment of children with CP on a 5-point scale according tomobility. It includes the need for assistive technology andwheeled mobility and is validated for parent-report [11]. The

SI is a 101-item, parent self-report questionnaire that in-ludes child domains (adaptability, acceptability, demand-ngness, mood, distractibility, reinforces parent) and parentomains (depression, attachment, role restriction, compe-ence, isolation, spouse, and health); summary scores reflectevels of parental stress related to child behavior and parentalole, as well a total stress score [12]. The Relationship Dimen-ion of the FES is a 27-item questionnaire that assesses familyohesion, conflict, and expressiveness. Reliability data sug-est that the scales measure relatively distinct characteristics

f family environment with reasonable consistency and cre-
Page 3: The Function of Parents and Their Children With Cerebral Palsy

100 Murphy et al FUNCTION OF PARENTS AND THEIR CHILDREN WITH CP

ate an overall parent-reported profile of family relationshipsand support [13,14]. The SEPTI is a domain-specific, 36-item validated scale that assesses parenting self-efficacy, de-fined by the parents’ perceptions of their ability to positivelyinfluence the behavior of their children, with respect to 5discrete parenting tasks: discipline, school achievement, rec-reation and socializing with peers, nurturance, and child’shealth; total scores are calculated to summarize responses[15].

Statistical Analysis

The primary dependent variables were the 5 subscales andthe total scale score of the PedsQL. Many of the variables ofinterest showed remarkably normal distributions, and nosubstantial outliers were present to indicate otherwise.Therefore, we determined Pearson correlation coefficientsbetween them and the scores from the other survey instru-ments. We compared the means of the survey instrumentswith population norms (when available) by using t-tests,assuming unequal within-group variances. We then usedthe technique of partial correlations to determine the effectof adjusting for disease severity and family/psychosocialfactors on associations between the physical and mentalhealth components of the SF-36 and the physical function,psychosocial health summary, and total scale scores of thePedsQL. Specifically, we computed partial correlations

Table 1. Characteristics of the participants (n � 51)

Age, y, mean (range) 41 (27-60)Relationship to child with CP, n (%)

Mother 45 (88)Father 5 (10)Grandmother 1 (2)

RaceWhite, non-Hispanic 45 (88)White, Hispanic 3 (6)Unknown 3 (6)

Marital statusMarried 44 (86)Single 1 (2)Separated/divorced 3 (6)Widowed 3 (6)

EmploymentFull-time 16 (31)Part-time 12 (24)Unemployed 23 (45)

Annual family income, USD�$60,000 18 (35)$30,000-60,000 23 (45)�$30,000 10 (20)

Sources of caregiver supportFamily 39 (76)Friends 9 (18)Home health aide 4 (8)Respite (DSPD) 16 (31)

Values are n (%) unless otherwise noted.

DSPD � Division of Services for People with Disabilities.

between these factors, adjusted for the GMFCS score(dichotomized as I-II versus III-V to distinguish childrenable to walk unassisted from those who relied on mobilitydevices), and then controlled for summary scores from thePSI, FES, and SEPTI [16]. Analyses were conducted by theuse of SAS version 9.2 (SAS Institute Inc., Cary, NC).

RESULTS

We invited 143 eligible parents of children with CP to par-ticipate in this study, and 86 (60%) parents/caregivers con-sented to participate. Among study participants, 51 of the 86(59%) completed the surveys. The principal reason for notcompleting the surveys was the time (more than 1 hour)required. The demographic characteristics of the parents areshown in Table 1 and those of their children in Table 2. Ofthe 51 parents completing the surveys, 45 (88%) were thechild’s mother. Forty-four parents (86%) were married. Thirty-nine (76%) indicated that they had received caregivingassistance from other family members. Nine (18%) indi-cated assistance from friends in addition to receivingassistance from family members. Twelve participants(24%) stated they received assistance from neither familymembers nor friends. Sixteen participants (31%) receivedrespite services from the Utah State Division of Services forPeople with Disabilities. Forty-six of the children with CP(90%) attended a school in their community. Thirty-threeof the children (65%) relied on mobility devices andwheelchairs as the result of their moderate-to-severe CP(GMFCS III-V).

Parent survey responses, with comparisons to those forwhich U.S. data are available, are summarized in Table 3.For the PedsQL, reference values for children with CP areavailable and were used for comparison. The PedsQLscores (parent-proxy) for the children in our study weresignificantly lower than for “healthy” U.S. children. Thesample also had lower physical function and total health-related quality of life scores compared with a national

Table 2. Child characteristics (n � 51)

Age, y, mean (range) 12.3 (5.1-18.8)Gender

Female 22 (43)Male 29 (57)

Functional classificationGMFCS I-II 18 (35)GMFCS III-V 33 (65)

Payer source*Private insurance 19 (38)Medicaid 11 (22)Private � Medicaid 15 (30)Self-pay 5 (10)

Values are n (%) unless otherwise noted. GMFCS � Gross Motor FunctionClassification System.*One child had unknown payer source.

sample of children with CP [17]. The SF-36 is standard-

Page 4: The Function of Parents and Their Children With Cerebral Palsy

feiwcloriictS

101PM&R Vol. 3, Iss. 2, 2011

ized so that a score of 50 corresponds to the 50th percen-tile for the U.S. population, with a standard deviation of10.

The physical component score of parents in our samplewas slightly, but not significantly, greater than that of thegeneral population, whereas the mental component scorewas significantly less [8]. Parents in our study reportedmuch greater levels of total parenting stress on the PSIthan typical U.S. parents [12]. FES scores, indicatingamily function, were greater than population norms. Par-nts reported greater cohesion and less conflict than typ-cal families [14]. SEPTI scores can range from 1.0 to 6.0,ith greater scores indicating greater parenting self-effi-

acy [15]. In this analysis, the 48 parents answering ateast 30 of the 36 SEPTI items had a total SEPTI calculatedn the basis of available data. Missing SEPTI data wereelated to the lack of correspondence between some SEPTItems (eg, achievement at school, discipline) and parent-ng a child with significant functional impairments. Weompared these results with the total score based by usinghe responses of the 42 caregivers who completed all 36

Table 3. Summary of survey results

Mean (SD)in StudySample

Peds QL [17]Physical Function (n � 49) 27.7 (26.1)Social Function (n � 48) 46.7 (18.2)School Function (n � 46) 51.1 (23.9)Emotional Function (n � 49) 61.3 (18.5)Psychosocial Health Sum Score (n � 48) 52.9 (14.3)Total Scale Score (n � 49) 43.8 (15.7)

Parent Health (SF-36) [8]Physical Component Score (n � 46) 51.9 (6.7)Mental Component Score (n � 46) 43.6 (11.8)

Parenting Stress Index (PSI) [12]Child Domain Subscale (n � 42) 150.4 (17.1)Parent Domain Subscale (n � 46) 176.5 (20.6)Total Stress (n � 40) 327.3 (32.7)

Family Environment Scale (FES) [14]Cohesion (n � 43) 7.5 (1.3)Expressiveness (n � 44) 6.0 (2.0)Conflict (n � 44) 2.3 (1.8)Total (n � 43) 20.3 (3.2)

Self-Efficacy for Parenting Tasks Index(SEPTI) [15]

Discipline (n � 47) 4.5 (0.9)Achievement (n � 44) 4.6 (0.7)Recreation (n � 43) 4.3 (0.9)Nurturance (n � 50) 5.0 (0.7)Health (n �50) 5.3 (0.6)Total (n � 48) 4.74 (0.6)

CP � cerebral palsy; n/a � not applicable.*Difference between study sample means and population norms (t-test us

EPTI items, and the results did not differ substantially.

Parent and Child Function

The correlations between the SF-36, PSI, FES, and SEPTIand the PedsQL total scale and 5 subscales scores areshown in Table 4 [8,12,14,15,17]. In general, the signifi-cant correlations ranged in magnitude from moderate tostrong (0.32-0.68). There were significant positive corre-lations between the SF-36 mental health component of theparents and PedsQL emotional, psychosocial, and totalhealth-related quality of life scores of the children. Therewere also positive correlations between the SF-36 physicalhealth component of the parents and child physical func-tion subscale of the PedsQL. There were significant asso-ciations between parent total stress (PSI) and every sub-scale of the PedsQL. On the relationship dimension of theFES, the cohesion and total scores had significant associ-ations with the child psychosocial health summary scores;cohesion was also associated with greater PedsQL totalscale scores and greater social and emotional summaryscores. The recreation component of the SEPTI, whichreflects a parent’s sense of competence in supporting thechild’s recreation and socialization with peers, was posi-

S. PopulationMean (SD)

PValue*

Mean forChildren with CP

PValue*

(n � 9430) (n � 224)84.5 (19.5) �.01 43.2 (27.6) �.0183.7 (19.4) �.01 52.1 (22.0) .0878.8 (19.6) �.01 52.0 (21.4) .8181.3 (16.5) �.01 62.7 (19.6) .6481.7 (15.2) �.01 55.9 (17.0) .2182.7 (15.4) �.01 51.3 (18.0) �.01

(n � 6742)50 (10) .062 n/a n/a50 (10) �.01 n/a n/a

(n � 2633)99.7 (18.8) �.01 n/a n/a

123.1 (24.4) �.01 n/a n/a222.8 (36.6) �.01 n/a n/a(n � 1432)

6.7 (1.5) �.01 n/a n/a5.5 (1.6) .11 n/a n/a3.2 (1.9) �.01 n/a n/a

n/a n/a(n � 145)

n/a n/a n/a n/an/a n/a n/a n/an/a n/a n/a n/an/a n/a n/a n/an/a n/a n/a n/a

4.90 (0.6) .09 n/a n/a

mary statistics and assuming unequal within-group variances).

U.

ing sum

tively correlated with every subscale of the Peds QL except

Page 5: The Function of Parents and Their Children With Cerebral Palsy

P

S

102 Murphy et al FUNCTION OF PARENTS AND THEIR CHILDREN WITH CP

physical function. Total SEPTI score was significantlypositively correlated with the child’s psychosocial healthsummary score and the total scale score.

Adjustment for Disease Severity andFamily Psychosocial Factors

To explore the influence of other factors of interest on therelationships between parent physical and mental health(SF-36) and the child’s physical, psychosocial, and totalhealth-related quality of life (PedsQL), we assessed the mag-nitude of the statistically significant associations betweenparent and child factors after controlling for severity of child’sCP (dichotomized GMFCS) and for family psychosocial vari-ables (PSI, FES, and SEPTI summary scores).

The correlation of 0.32 between parent physical healthand child physical function decreased to 0.24 when adjustedfor severity of the child’s CP. When we controlled for PSI,FES and SEPTI summary scores, the partial correlation be-tween parent physical health and child physical functionincreased to 0.30.

The correlation of 0.27 between parent physical healthand child total health-related quality of life decreased to 0.19when adjusted for severity of the child’s CP. Further adjust-ing for PSI, FES, and SEPTI summary scores to the modelfurther reduced the partial correlation to 0.07.

The correlation of 0.40 between parent mental health and

Table 4. Correlations (Pearson) between parent and child fun

PhysicalFunction

SocFunc

arent Health (SF-36)Mental Component 0.26 0.Physical Component 0.32† 0.

Parenting Stress Index (PSI)Parent Domain 0.52* 0.Child Domain 0.38† 0.Total Stress 0.55* 0.

Family Environment Scale (FES)Relationship Dimension

Cohesion 0.24 0.Expressiveness 0.08 0.Conflict 0.14 �0.Total 0.06 0.

elf-Efficacy for Parenting Tasks Index(SEPTI)

Discipline 0.12 0.Achievement 0.17 0.Recreation 0.29 0.Nurturance 0.05 0.Health 0.17 0.Total 0.21 0.

CP � cerebral palsy; Peds QL � Pediatric Quality of Life Inventory 4.0.*P � .01; †P � .05.

the child psychosocial health increased slightly to 0.46 when

adjusted for severity of CP. Controlling further for PSI, FES,and SEPTI, summary scores decreased this correlation to0.32.

The correlation of 0.38 between parent mental health andchild total health-related quality of life score increased to0.53 after adjusting for the severity of CP. After furthercontrolling for PSI, FES, and SEPTI summary scores, thepartial correlation decreased to 0.36.

DISCUSSION

As anticipated, parents in our study experienced poorerphysical and mental health compared with parents of typi-cally developing children. We observed a modest positiveassociation between the physical health of parents and thephysical function of their children with CP. However, thisassociation was no longer significant when adjusted for theseverity of their child’s CP, suggesting that the severity of CPis a confounder, likely influencing both parent and childhealth. Similarly, parent mental health was associated withboth the psychosocial function and the overall quality of lifeof their children with CP, and these associations werestrengthened when adjusted for CP severity. Because adjust-ing for the severity of the child’s CP does not fully explain theobserved associations between parent health and child func-tion, it is likely that other unaccounted factors are influencing

Function of Child with CP (Peds QL)

SchoolFunction

EmotionalFunction

Psychosocial HealthSum Score

Total ScaleScore

0.26 0.46* 0.40* 0.38†

0.20 �0.03 0.15 0.27

0.39* 0.35† 0.47* 0.58*0.55* 0.21 0.56* 0.56*0.55* 0.32† 0.61* 0.68*

0.30 0.36† 0.47* 0.40†

0.05 0.14 0.15 0.14�0.01 �0.15 �0.09 0.04

0.16 0.30 0.33† 0.22

0.18 0.19 0.20 0.180.29 0.14 0.30 0.270.33† 0.33† 0.53* 0.47*

�0.10 0.09 0.05 0.070.09 0.11 0.16 0.200.22 0.23 0.32† 0.30†

ction

ialtion

1618

2944*42*

32†

190427

041952*141324

this relationship.

Page 6: The Function of Parents and Their Children With Cerebral Palsy

103PM&R Vol. 3, Iss. 2, 2011

In addition to parent health, parenting stress, self-efficacy,and family function have been suggested as important corre-lates of child outcomes [5,18,19]. Stress in parents of chil-dren with disabilities has been linked to child behaviorproblems, limitations in child function, caregiving demands,and caregiver self-efficacy [5]. Stress occurs when there is amismatch between parenting demands and the parents’ per-ceived ability to respond [20]. Parents in our study reportedhigh levels of parenting stress. Glenn et al [21] found thatmothers of children with CP had greater total stress (PSI)than typical parents, but the majority of mothers were copingwell and did not perceive the level of their child’s impairmentas necessarily stressful. Knussen and Sloper’s [22] report thatparenting stress is not directly linked to the level and natureof a child’s disability but is influenced by social support,stressful life events, marital satisfaction, coping skills, andfinancial resources. In this study, parental stress goes up asthe child’s physical, social, school, and emotional functionincreases. This finding is consistent with that of other re-searchers and strengthens the conclusion that parentingstress is not related to a child’s disability itself but to otherparent, family, and social factors. Conversely, this findingmay imply that parents whose children achieve greater func-tion pay a greater cost in terms of measured parental stress[5]. It is likely that parent stress is affected by and influencesthe functioning of their children with CP.

High parenting self-efficacy, or the parents’ perceptionsof their ability to positively influence the behavior of theirchildren, has been strongly associated with the parentalcapacity to provide a nurturing environment [15]. Simi-larly, family function has been found to be an importantpredictor of outcomes for children with disabilities [5].Although we hypothesized that greater parenting self-efficacy and greater family functioning influence the rela-tionship relationships between the function of parents andtheir children with CP, we found no significant effect. Thismay be explained either by the lack of variability amongstudy participants in reported levels of parenting selfefficacy and family function (Table 3), or by the possibilitythat our selected measurement tools failed to capture thesalient parent and family factors that may influence therelationship. We suspect that the families that participatedin our study were well adapted to their parenting rolesassociated with their children with CP.

Although the directionality of the associations betweenthe function of parents and their children with CP cannot bedetermined by this study, they are consistent with the ICFmodel of disability, which emphasizes that the relationshipbetween a child’s health condition and his/her ultimate func-tion is strongly influenced by environmental and personalfactors [1]. Parent function is an important component of achild’s environment. The importance of caregiver well-beingis emphasized in the adult family caregiving literature, which

defines effective caregivers as those who “provide technical,

physical, and emotional care that results in optimal patientconditions while maintaining their own well-being” [23].Although there are services available to improve child psy-chosocial and physical functioning, assistance for parents islargely unavailable. Our findings suggest that interventionsthat promote parent functioning, especially in mental health,may promote positive outcomes for their children with dis-abilities.

This study has several limitations. The cross-sectionaldesign precludes the determination of causal or tempo-rally associated relationships; prospective, longitudinalstudies of parents and their children with disabilities frominfancy to adulthood are needed to fully characterize thedynamic experience of caregiving. Second, the validity ofself-report instruments may be limited by recall bias andlack of objectivity. In addition, not all caregivers answeredall of the questions, and it is possible that if they had, theresults may have been slightly different. However, thesedisadvantages are outweighed by the utility of these in-struments in summarizing a wide range of experiencesoccurring over a short period of time and in their ease ofadministration. Third, the parents who participated in thisstudy were generally in good health, married, and withintact families, and they were willing to devote the neces-sary time to complete the surveys. Approximately 40% ofotherwise-eligible parents did not participate. We do nothave demographic information regarding nonparticipants.It is possible that responses of those who did not partici-pate would have differed from those who did participate.Moreover, the SEPTI may not adequately measure parent-ing self-efficacy in parents of children with more severefunctional impairments. Finally, the parents in our studywere white and middle class. The experiences and percep-tions of parents of children with CP from other cultures,backgrounds, or circumstances, and those living in pov-erty with fewer resources may differ from those in oursample. Despite these limitations, we believe that thesignificant associations between the function of parentsand that of their children with CP are important andworthy of further research in longitudinal studies thatinclude larger and more diverse samples of parent partic-ipants.

CONCLUSIONS

We found a clear positive correlation between the function ofparents and the function of their children with CP. Althougha cross-sectional study does not demonstrate the direction ofthe relationship, it seems reasonable to conclude that clini-cians who are attempting to directly maximize child functionshould also consider the potential value of interventions thatsupport and improve parent function, particularly parent

mental health.
Page 7: The Function of Parents and Their Children With Cerebral Palsy

104 Murphy et al FUNCTION OF PARENTS AND THEIR CHILDREN WITH CP

REFERENCES1. World Health Organization. International Classification of Function-

ing, Disability and Health (ICF). 2009. Available at: http://www.who.int/classifications/icf/en/. Accessed May 8, 2009.

2. Murphy NA, Christian B, Caplin DA, Young PC. The health of caregiv-ers for children with disabilities: Caregiver perspectives. Child CareHealth Dev 2007;33:180-187.

3. Raina P, O’Donnell M, Schwellnus H, et al. Caregiving process andcaregiver burden: Conceptual models to guide research and practice.BMC Pediatr 2004;4:1.

4. Tong HC, Haig AJ, Nelson VS, Yamakawa KS, Kandala G, Shin KY. Lowback pain in adult female caregivers of children with physical disabili-ties. Arch Pediatr Adolesc Med 2003;157:1128-1133.

5. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being ofcaregivers of children with cerebral palsy. Pediatrics 2005;115:e626-e636.

6. Brehaut JC, Kohen DE, Raina P, et al. The health of primary caregiversof children with cerebral palsy: How does it compare with that of otherCanadian caregivers? Pediatrics 2004;114:e182-191.

7. High PC. School readiness. Pediatrics 2008;121:e1008-e1015.8. Ware JE. SF-36 Health Survey Update. Available at: http://www.

sf-36.org/tools/sf36.shtml. Accessed March 30, 2009.9. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: Reliability and validity of the

Pediatric Quality of Life Inventory version 4.0 generic core scales inhealthy and patient populations. Med Care 2001;39:800-812.

10. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as apediatric population health measure: Feasibility, reliability, and valid-ity. Ambul Pediatr 2003;3:329-341.

11. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B.

Development and reliability of a system to classify gross motor function

in children with cerebral palsy. Dev Med Child Neurol 1997;39:214-223.

12. Parenting Stress Index, 3rd ed, Professional Manual [computer pro-gram]. Lutz, FL: Psychological Assessment Resources; 1995.

13. Family Environment Scale (FES) [computer program]. Mountain View,CA: Consulting Psychologists Press; 1974.

14. Moos RH, Moos BS. Family Environment Scale Manual: Development,Applications, Research. 3rd ed. Palo Alto, CA: Mind Garden; 2002.

15. Coleman PK, Karraker KH. Parenting self-efficacy among mothers ofschool-aged children: Conceptualization, measurement, and corre-lates. Fam Relat 2000;49:13-24.

16. Tabachnick BG, Fidell LS. Using Multivariate Statistics. 4th ed. Boston:Allyn & Bacon; 2001.

17. Varni JW, Limbers CA, Burwinkle TM. Impaired health-related qualityof life in children and adolescents with chronic conditions: A compar-ative analysis of 10 disease clusters and 33 disease categories/severitiesutilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Out-comes 2007;5:43.

18. Montigny F, Lacharite C. Perceived parental efficacy: Concept analysis.J Adv Nurs 2005;49:387-396.

19. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stressprocess: An overview of concepts and their measures. Gerontologist1990;30:583-594.

20. Eicher PS, Batshaw ML. Cerebral palsy. Pediatr Clin North Am 1993;40:537-551.

21. Glenn S, Cunningham C, Poole H, Reeves D, Weindling M. Maternalparenting stress and its correlates in families with a young child withcerebral palsy. Child Care Health Dev 2009;35:71-78.

22. Knussen C, Sloper P. Stress in families of children with disability: Areview of risk and resistance factors. J Ment Health 1992;1:241-256.

23. Smith CE. Caregiving effectiveness in families managing complex tech-

nology at home: Replication of a model. Nurs Res 1999;48:120-128.