Health and Psychosocial Functioning of Health and Psychosocial Functioning of Caregivers of Children with Caregivers of Children with

Neurodevelopmental Disorders: Neurodevelopmental Disorders: Preliminary Results from the NLSCYPreliminary Results from the NLSCY

Lach, L.M., Kohen, D.E., Garner, R.E., Miller, Lach, L.M., Kohen, D.E., Garner, R.E., Miller, A.R., Brehaut, J.C., Klassen, A.F., & A.R., Brehaut, J.C., Klassen, A.F., &

Rosenbaum, P.Rosenbaum, P.

Research Seminar – Centre for Research on Research Seminar – Centre for Research on Children and Families, McGill UniversityChildren and Families, McGill University

April 18, 2007April 18, 2007

Funded by CIHR 2005-2007

IntroductionIntroduction Children and adolescents with Children and adolescents with

neurodevelopmental disordersneurodevelopmental disorders– motor, cognitive, behavioural and/or language motor, cognitive, behavioural and/or language

impairmentimpairment– up to 9.3% of youth <18 years of age (CDCP, up to 9.3% of youth <18 years of age (CDCP,

2005)2005) prevalence rates for individual disorders:prevalence rates for individual disorders:

– CP (0.18% to 0.25%; Johnson, 2002; Missiuna et al., CP (0.18% to 0.25%; Johnson, 2002; Missiuna et al., 2001; Newacheck & Taylor, 1992)2001; Newacheck & Taylor, 1992)

– Epilepsy (0.68% to 0.9%; Silanpaa, 1992; Pless & Epilepsy (0.68% to 0.9%; Silanpaa, 1992; Pless & Graham, 1970; McDermott et al., 1995)Graham, 1970; McDermott et al., 1995)

– Developmental delay (4%; Boyle, 1994)Developmental delay (4%; Boyle, 1994)

IntroductionIntroduction

Children with emotional/behavioural Children with emotional/behavioural problems:problems:– Prevalence rates vary from 6.13% (Boyle, Prevalence rates vary from 6.13% (Boyle,

1994) to 18.1% (Offord, et al., 1987)1994) to 18.1% (Offord, et al., 1987) Emotional disorders rates vary from 5% in 12-16 Emotional disorders rates vary from 5% in 12-16

year old males to 10.7% in 4-11 year old females year old males to 10.7% in 4-11 year old females (Links et al., 1989)(Links et al., 1989)

Externalizing behaviour rates vary from 3.8% for Externalizing behaviour rates vary from 3.8% for girls in the UK to 7.0% for boys in the US girls in the UK to 7.0% for boys in the US (McCulloch, Wiggins, Joshi, & Sachdev, 2000)(McCulloch, Wiggins, Joshi, & Sachdev, 2000)

IntroductionIntroduction Children and adolescents who have a chronic health condition Children and adolescents who have a chronic health condition

accompanied by a disability are at increased risk for compromised accompanied by a disability are at increased risk for compromised emotional, behavioural and social outcomes (Cadman et al., 1986emotional, behavioural and social outcomes (Cadman et al., 198611; ; McDermott et al., 1996McDermott et al., 199622))– O.R. 3.4 for psychiatric disorderO.R. 3.4 for psychiatric disorder11

– O.R. 5.4 for social isolationO.R. 5.4 for social isolation11 – aOR 2.5 for behaviour problemsaOR 2.5 for behaviour problems22

Odds risk ratio varies depending on gender and age groupOdds risk ratio varies depending on gender and age group

25%-32% of youth with neuro-epileptic disorders have problematic 25%-32% of youth with neuro-epileptic disorders have problematic behaviour (Rutter, Graham, & Yule, 1970)behaviour (Rutter, Graham, & Yule, 1970)– 31.4% of children with epilepsy have behaviour problems (McDermott 31.4% of children with epilepsy have behaviour problems (McDermott

et al., 1995)et al., 1995)– 25.5% of children with cerebral palsy have behaviour problems 25.5% of children with cerebral palsy have behaviour problems

(McDermott et al., 1996)(McDermott et al., 1996)

IntroductionIntroduction Caregivers of children and adolescents with CHCCaregivers of children and adolescents with CHC

- Compromised physical and psychological healthCompromised physical and psychological health- Increased rates of tx for ‘nerves’ (OR 2.1 for mothers and 1.9 for Increased rates of tx for ‘nerves’ (OR 2.1 for mothers and 1.9 for

fathers) and significantly higher maternal negative affect scores fathers) and significantly higher maternal negative affect scores (Cadman et al., 1991)(Cadman et al., 1991)

- Population-based studies suggest that there are no differences Population-based studies suggest that there are no differences in rates of social isolation or family functioning of caregivers in rates of social isolation or family functioning of caregivers (Cadman et al., 1991)(Cadman et al., 1991)

- However, clinical studies provide evidence for and against a However, clinical studies provide evidence for and against a difference between health and psychosocial adjustment of difference between health and psychosocial adjustment of caregivers of children with CHC and caregivers of children who caregivers of children with CHC and caregivers of children who do not have CHC (Brehaut et al., 2004; Dunst & Trivette, 1986)do not have CHC (Brehaut et al., 2004; Dunst & Trivette, 1986)

IntroductionIntroduction

One of the factors that predicts caregiver health One of the factors that predicts caregiver health is that of child behaviour problemsis that of child behaviour problems– in parents of children with non-progressive in parents of children with non-progressive

neurodevelopmental disorders (King, King, neurodevelopmental disorders (King, King, Rosenbaum, & Goffin, 1999)Rosenbaum, & Goffin, 1999) Pathway coefficient = 0.60Pathway coefficient = 0.60

– in caregivers of children with cerebral palsy (Raina, in caregivers of children with cerebral palsy (Raina, O’Donnell, Rosenbaum, Brehaut, Walter, & Rusell et O’Donnell, Rosenbaum, Brehaut, Walter, & Rusell et al., 2005)al., 2005) Beta coefficient = -0.22 for psychological healthBeta coefficient = -0.22 for psychological health Beta coefficient = -0.18 for physical healthBeta coefficient = -0.18 for physical health

IntroductionIntroduction Limitations in existing studies:Limitations in existing studies:

– Epidemiological studies are limited in their Epidemiological studies are limited in their generalizability to this population:generalizability to this population: Categorical listings of that which constitutes a chronic health Categorical listings of that which constitutes a chronic health

condition or a special care need are inconsistently defined condition or a special care need are inconsistently defined from study to study and is a more inclusive groupfrom study to study and is a more inclusive group

range in severity from asthma/allergies to severe mobility range in severity from asthma/allergies to severe mobility and cognitive problemsand cognitive problems

Focus on children and adolescents with specific Focus on children and adolescents with specific neurodevelopmental disorders such as epilepsy, CP or neurodevelopmental disorders such as epilepsy, CP or developmental delay developmental delay

Co-morbidity insofar as a proportion of each population-Co-morbidity insofar as a proportion of each population-based sample will have one or two of the other conditionsbased sample will have one or two of the other conditions

IntroductionIntroduction

Limitations in existing studies:Limitations in existing studies:– Clinical studies are also limited in their Clinical studies are also limited in their

generalizability as the samples are:generalizability as the samples are: Recruited from acute care tertiary centres or Recruited from acute care tertiary centres or

rehabilitation-based sitesrehabilitation-based sites Comprised of small convenience samples (non-Comprised of small convenience samples (non-

random)random) Also categorical in natureAlso categorical in nature

Objective of This StudyObjective of This Study To describe and compare the health and To describe and compare the health and

psychosocial adjustment of caregivers of children psychosocial adjustment of caregivers of children who have a neurodevelopmental diagnosis or who have a neurodevelopmental diagnosis or symptoms indicative of a neurodevelopmental symptoms indicative of a neurodevelopmental condition (hereinafter referred to as condition (hereinafter referred to as neurodevelopmental disorder) to those who do not neurodevelopmental disorder) to those who do not have a child with a neurodevelopmental disorder.have a child with a neurodevelopmental disorder.

– What is their physical and emotional health?What is their physical and emotional health?– What is their family functioning?What is their family functioning?– What is their social support?What is their social support?– What is their marital satisfaction?What is their marital satisfaction?

MethodMethod SurveySurvey

– NLSCY (Statistics Canada and Social Development NLSCY (Statistics Canada and Social Development Canada)Canada)

– Started in 1994 and biennially repeatedStarted in 1994 and biennially repeated– Person most knowledgeable (PMK) provides Person most knowledgeable (PMK) provides

information on the child as well as information about information on the child as well as information about him/herself and his/her spouse or partnerhim/herself and his/her spouse or partner

– 90% of cases, the PMK is the child’s biological mother90% of cases, the PMK is the child’s biological mother– n=22,831 0-11 year old children were interviewed in n=22,831 0-11 year old children were interviewed in

1994/95 1994/95 – Sample was taken from all areas of the country Sample was taken from all areas of the country

proportionate to regional population (except Yukon, proportionate to regional population (except Yukon, Northwest Territories, and Nunavut)Northwest Territories, and Nunavut)

MethodMethod

SampleSample– All children age 4 and older from cycle 1 of All children age 4 and older from cycle 1 of

the NLSCY (n=14,226)the NLSCY (n=14,226)– 4 groups4 groups

Neurodevelopmental disorderNeurodevelopmental disorder Neurodevelopmental disorder + externalizing Neurodevelopmental disorder + externalizing

behaviour problembehaviour problem Externalizing behaviour problemExternalizing behaviour problem NeitherNeither

Method - SampleMethod - Sample

Locating caregivers of children with Locating caregivers of children with neurodevelopmental disorders in the neurodevelopmental disorders in the database:database:– Categorical listing of diagnoses: cerebral palsy, epilepsy, Categorical listing of diagnoses: cerebral palsy, epilepsy,

mental handicap, learning disability (6-11 year old group mental handicap, learning disability (6-11 year old group only)only)

– Health Utilities Index (Feeny et al., 1995)Health Utilities Index (Feeny et al., 1995) Speech (score 3-5)Speech (score 3-5) Ambulation (3-6)Ambulation (3-6) Dexterity (2-6)Dexterity (2-6) Cognitive (4-6)Cognitive (4-6)

HUI Domain Scores for Those HUI Domain Scores for Those Identified Using Categorical ListIdentified Using Categorical List

1.50 (1.21)2.44 (1.50)1.25 (1.00)3.38 (2.03)Cerebral Palsy (n=16)

0.28 (0.83)2.88 (1.49)1.09 (0.56)1.11 (0.65)Learning Disability (n=371)

2.81 (1.52)4.21 (1.54)1.77 (1.66)1.81 (1.68)Mental Handicap (n=43)

1.93 (1.54)2.84 (1.82)1.36 (1.19)1.56 (1.42)Epilepsy (n=45)

Speech (3-5)

Cognition (4-6)

Dexterity(2-6)

Mobility (3-6)

Mean (S.D.) Scores on Health Utilities Index (HUI) Functional Domains

Method - SampleMethod - Sample Locating caregivers of children with Locating caregivers of children with

externalizing behaviour problems in the externalizing behaviour problems in the database:database:– 5 subscales derived using factor analysis on a 37-5 subscales derived using factor analysis on a 37-

item parent-reported measureitem parent-reported measure Hyperactivity/inattention*Hyperactivity/inattention* Emotional disorder/anxietyEmotional disorder/anxiety Conduct disorder/physical aggression*Conduct disorder/physical aggression* Indirect aggression*Indirect aggression* Absence of prosocial behavioursAbsence of prosocial behaviours

– Included children whose scores were 2 S.D. above Included children whose scores were 2 S.D. above the mean on 3 of these subscalesthe mean on 3 of these subscales

* Subscales used in this study

Method - SampleMethod - Sample

94678303 1164 (12.3)Total

79867236 (76.43)

750 (7.92)No

1481 (15.64)

1067 (11.27)

414 (4.37)Yes

Externalizing Behaviour Problem

TotalNoYes

Neurodevelopmental Disorder

N=313 had missing information required to identify neurodevelopmental disorderand/or behaviour problemRemaining 13,913 children were represented by 9,467 caregivers and so one child was selected per household for inclusion

Method - MeasuresMethod - Measures Measurement of Physical Health - Checklist

• Food allergies• Other allergies• Asthma• Back problems• High blood pressure• Migraine headaches• Bronchitis• Sinusitis

• Diabetes• Epilepsy • Heart disease• Cancer• Ulcers• Urinary incontinence• Cataracts • Glaucoma• Other Chronic Condition

Method - MeasuresMethod - Measures

Measurement of Physical HealthMeasurement of Physical Health

– Question regarding whether caregiver is Question regarding whether caregiver is limited in at least one domain of activity at limited in at least one domain of activity at home, school, in caring for children, or in home, school, in caring for children, or in other activities such as transportation or other activities such as transportation or leisure (Yes/No)leisure (Yes/No)

– Ranking of general health on a scale of 1 to 5 Ranking of general health on a scale of 1 to 5 (dichotomized into excellent/very good and (dichotomized into excellent/very good and good/fair/poor health)good/fair/poor health)

Method - MeasuresMethod - Measures

Measurement of Psychological Health

– Centre for Epidemiological Studies Depression Scale (CES-D; Radloff et al., 1977)

– 12 item, 4 point scale focused on frequency of occurrence of symptoms in the last week

– Scores range from 0 to 36; higher scores indicate presence of depressive symptoms

– alpha = 0.82

Method - MeasuresMethod - Measures Measurement of Family FunctioningMeasurement of Family Functioning

– General Family Functioning subscale of the Family Assessment General Family Functioning subscale of the Family Assessment Device (FAD; Epstein et al., 1981)Device (FAD; Epstein et al., 1981)

– 12 item; 4 point Likert response scale12 item; 4 point Likert response scale– Score from 0 to 36; higher scores mean more problematic Score from 0 to 36; higher scores mean more problematic

functioningfunctioning– Clinical cut-off of 15 (functional/problematic functioning)Clinical cut-off of 15 (functional/problematic functioning)– Cronbach alpha = 0.88Cronbach alpha = 0.88

Measurement of Marital SatisfactionMeasurement of Marital Satisfaction

– Caregivers rated their marital satisfaction on a scale of 1 to 11 Caregivers rated their marital satisfaction on a scale of 1 to 11 where 1 is completely dissatisfied and 11 is completed satisfiedwhere 1 is completely dissatisfied and 11 is completed satisfied

Method - MeasuresMethod - Measures Measurement of Social SupportMeasurement of Social Support

– 6 item; 4 point Likert-type response scale6 item; 4 point Likert-type response scale– Scores from 0 to 18; higher scores indicate higher levels of Scores from 0 to 18; higher scores indicate higher levels of

perceived social supportperceived social support– Chronbach Alpha = 0.82Chronbach Alpha = 0.82

– Question regarding whether caregivers received help from any Question regarding whether caregivers received help from any of the following over the last 12 months: of the following over the last 12 months: Community or social servicesCommunity or social services Health professionalsHealth professionals Religious or spiritual leaders or communitiesReligious or spiritual leaders or communities Books or magazinesBooks or magazines

– Scores range from 0 to 4; higher scores indicate endorsement of Scores range from 0 to 4; higher scores indicate endorsement of more sources of social supportmore sources of social support

AnalysisAnalysis Basic descriptive statistics for sociodemographic Basic descriptive statistics for sociodemographic

characteristics as well as for each of the outcome measures characteristics as well as for each of the outcome measures of caregiver healthof caregiver health

Chi-square and ANOVA for between group comparison Chi-square and ANOVA for between group comparison adjusted using Bonferroni methodadjusted using Bonferroni method

Multivariate regression models:Multivariate regression models:– To assess independent effects of having a child with a To assess independent effects of having a child with a

neurodevelopmental disorder or externalizing behaviour problem neurodevelopmental disorder or externalizing behaviour problem while controlling for sociodemographic characteristics; interaction while controlling for sociodemographic characteristics; interaction term included in order to determine if both different from additive term included in order to determine if both different from additive modelmodel

– Linear models for continuous outcomesLinear models for continuous outcomes– Poisson models for count outcomesPoisson models for count outcomes– Logistic models for binary outcomesLogistic models for binary outcomes– Bootstrapped to account for complex survey design (INSET RAO Bootstrapped to account for complex survey design (INSET RAO

REF)REF)

F(3) = 10.46, p < .0001

4.18 (1.13)

4.33 (1.20)

4.35 (1.34)

4.11 (1.13)

Family size, mean (sd)

F(3) = 22.28, p < .0001

$53,223($38,251)

$48,978($33,690)

$49,104($34,454)

$39,448($27,519)

Household income, mean (sd)

X2 = 102.91, p < .0001

84.0575.6578.3969.12% Two-parent families

Family Characteristics

X2 = 11.30, p<.0194.4696.7095.6093.77% born in Canada

X2 = 96.33, p < .0001

49.9651.7861.9470.15% male

F(3) = 56.31, p < .0001

7.38 (2.38)

7.51 (2.22)

8.21 (2.16)

8.53 (1.93)

Age, mean (sd)

Child Characteristics

Neither(n=7236)

Ext. Only (n=1067)

Neuro.Only

(n=750)Both

(n=414)

Comparison

Caregiver of Child With…

Characteristics

Preliminary FindingsPreliminary Findings

ComparisonNeither(n=7236)

Ext. Only(n=1067)

Neuro. Only

(n=750)Both

(n=414)

24.7733.3933.2953.67Daily smoker4.743.784.233.58Occasional smoker

X2 = 199.29, p < .0001

70.4962.8362.4542.75Non-smoker, incl. former smoker

Smoking status (%)

10.6017.3716.9219.96Divorced, separated or widowed

84.4676.1378.3570.28Married, incl. common-law X2 = 110.53, p < .0001

4.946.504.739.76Single, never-married

PMK marital status (%)

X2 = 66.17, p < .000184.8979.8981.0071.67% with at least a high school

education

X2 = 12.65, p =.00689.5389.8092.9392.81% female

F(3) = 12.65, p < .0001

36.00 (5.83)

35.12 (5.31)

35.32 (5.16)

34.98 (4.87)Age, mean (sd)

Caregiver Characteristics

X2(3) = 31.95, p<.00011.81A,C3.95D2.504.67D Bronchitis

X2(3) = 68.21, p<.00019.21A,B,C14.85D14.36D17.70D Migraine

X2(3) = 14.32, p=0.0032.58C4.36B,D1.78C2.25 High blood pressure

X2(3) = 83.11, p<.000110.24A,C14.66A,D11.93A23.77B,C,D Back problems

X2(3) = 51.42, p<.00014.77A,B,C7.50D7.97D11.48D Arthritis

X2(3) = 39.19, p<.00015.64A,C8.10A,D6.09A12.58B,C,D Asthma

X2(3) = 16.67, p=.000817.36A,C20.80D18.7323.66D Other allergies

X2(3) = 30.49, p<.00015.31B,C7.75D9.52A,D4.46B Food allergies

Chronic conditions, % yes

X2(3) = 97.38, p<.000141.60A,B,C50.95A,D52.27D59.29C,DHas at least one chronic

condition, % yes

D: Neither(n=7236)

C: Ext. Only

(n=1067)

B: Neuro. Only

(n=750)A: Both(n=414)

Comparison

Caregiver of Child With…Physical and Psychological Health Indicators

X2(3) = 33.93, p<.00015.42A,B7.06A8.14D11.49C,D Other chronic

condition

X2(3) = 2.08, ns0.490.61…… Urinary incontinence

X2(3) = 9.19, p=.032.23A2.533.224.28D Ulcers

X2(3) = 13.97, p=.0030.43C1.25D…… Cancer

X2(3) = 8.29, p=.040.640.801.171.72 Heart disease

X2(3) = 20.55, p<.00010.29B0.651.38D… Epilepsy

X2(3) = 4.41, ns0.941.231.301.88 Diabetes

X2(3) = 21.25, p<.00013.98A,C6.59D4.696.93D Sinusitis

Chronic conditions, % yes

D: Neither(n=7236)

C: Ext. Only

(n=1067)

B: Neuro. Only

(n=750)A: Both(n=414)

Comparison

Caregiver of Child With…Physical and Psychological Health Indicators

F(3) = 140.42, p<.0001

4.26 (5.03)ABC

6.65 (6.75)ABD

5.85 (6.55)ACD

8.74 (7.25)BCDDepression, mean (SD)

X2(3) = 120.61, p<.000175.70A,B,C68.37A,D68.10A,D54.31B,C,D

General health status is excellent/very good, % yes1

X2(3) = 85.91, p<.00019.19A,B,C13.10A,D15.02A,D21.13B,C,D

Is limited in at least one domain of activity, % yes

7.3613.358.4318.563+

10.6413.6415.4416.062

23.6023.9728.4124.671 X2(9) = 164.26, p<.0001

58.4049.0547.7340.710

A,B,CB,DA,C,DB,DNumber of conditions, %

D: Neither(n=7236)

C: Ext. Only

(n=1067)

B: Neuro. Only

(n=750)A: Both(n=414)

Comparison

Caregiver of Child With…Physical and Psychological Health Indicators

F(3) = 7.51, p<.0001

9.43 (1.96)C

9.11 (1.94)D

9.27 (2.01)

9.22(2.02)

Marital Satisfaction, mean (sd)3

F(3) = 42.06, p<.0001

0.75 (1.03)A,B,C

1.00 (1.13)A,D

1.01(1.14)D

1.16 (1.27)C,D

# of Sources of Helpful Support, mean (sd)

F(3) = 11.32, p<.0001

14.54(2.82)A,C

14.19 (3.06)D

14.35 (2.99)A

13.86 (2.72)B,D

Social Support Scale, mean (sd)2

F(3) = 56.87, p<.0001

7.72 (5.08)A,B,C

9.14 (5.38)A,D

8.58 (5.32)A,D10.41 (5.42)B,C,D

Family Functioning Scale, mean (sd)1

D: Neith

er(n=7236)

C: Ext. Only

(n=1067)

B: Neuro. Only

(n=750)A: Both(n=414)

Comparison

Caregiver of Child With…

Psychosocial Functioning

Preliminary Findings - PsychosocialPreliminary Findings - Psychosocial

ns0.15-0.18General health status is excellent/very good,% yes (n=9379)

ns0.170.25Any activity limitation (n=9379)ns0.180.19Any chronic condition (n=9378)

Logistic Regression

ns0.240.24Number of sources of helpful support (n=9347)

ns0.340.21Number of chronic conditions (n= )

Poisson Regression0.33-0.32-0.15 (ns)Marital satisfaction (n=7764)ns-0.28nsSocial support (n=9324)ns1.320.82Family functioning (n=9287)ns2.061.38Depression (n=9248)

Linear RegressionInteractionAny Ext.Any Neuro.

Regression coefficientsOutcomes

Marital Satisfaction

9.17

9.49

9.34 9.35

9

9.1

9.2

9.3

9.4

9.5

9.6

No External Externalizing

Scal

e ra

nge

0-11

No Neuro Neuro Disorder

Preliminary Findings – Marital Preliminary Findings – Marital SatisfactionSatisfaction

DiscussionDiscussion

What is the take home message?What is the take home message?– Caregivers of children with Caregivers of children with

neurodevelopmental disabilities and neurodevelopmental disabilities and externalizing behaviour problems are more externalizing behaviour problems are more likely to have….likely to have….

ConclusionConclusion

Implications for PracticeImplications for Practice– Need to assess for caregiver health and problematic Need to assess for caregiver health and problematic

family functioningfamily functioning– Need for prevention programsNeed for prevention programs

Implications for Future ResearchImplications for Future Research– What is it about the family functioning that is What is it about the family functioning that is

problematic?problematic?– What kind of support impacts on caregiver health?What kind of support impacts on caregiver health?

Implications for PolicyImplications for Policy– Need for services to be family-centredNeed for services to be family-centred

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