Research in Developmental Disabilities 33 (2012) 1732–1740

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Research in Developmental Disabilities

Predicting mental health among mothers of school-aged children withdevelopmental disabilities: The relative contribution of child, maternaland environmental factors

Helen Bourke-Taylor a,*, Julie F. Pallant b, Mary Law c, Linsey Howie d

a Department of Occupational Therapy, School of Primary Health Care, Faculty of Medicine, Nursing and Health Sciences, Monash University – Peninsula Campus, PO

Box 527, Frankston, Victoria 3199, Australiab Rural Health Academic Centre, University of Melbourne, 49 Graham St, Shepparton, Victoria 3630, Australiac CanChild Centre for Childhood Disability Research, McMaster University, IAHS Bldg, Hamilton, Canadad Department of Occupational Therapy, La Trobe University, Bundoora, Victoria 3086, Australia

A R T I C L E I N F O

Article history:

Received 6 February 2012

Received in revised form 14 April 2012

Accepted 16 April 2012

Available online 13 June 2012

Keywords:

Caring

Developmental disability

Maternal health

A B S T R A C T

Aim: Many mothers of children with developmental disabilities are known to experience

high levels of stress, and compromised mental health. Research is crucial to better

understand and assist mothers with compromised mental health, and ultimately better

service families raising and supporting a child with a disability.

Method: Data were collected using cross sectional mail-out survey with follow up phone

call. Instruments included the Short Form 36 version 2 (SF-36v2) and instruments that

measured maternal, child and environmental factors. Descriptive statistics examined

characteristics of participants. Correlation, t-tests, and multiple regression analyses were

used to identify factors associated with mothers’ mental health.

Results: Mothers (N = 152) cared for a school-aged child (aged 5–18 years) with high care

needs and developmental disabilities including autism spectrum disorder (n = 94);

cerebral palsy (n = 29); attention deficit hyperactivity disorder (n = 19). Factors associated

with maternal mental health included the child’s psychosocial health (r = .36) and

challenging behaviour (r = �.33); maternal empowerment (r = .40); maternal participation

in health promoting activities (r = .43); and the child’s unmet service needs (r = �.29). The

strongest predictors of maternal mental health in this cross sectional study were maternal

participation in healthy activity and empowerment, the child’s emotional functioning and

unmet service needs.

Conclusion: This study identified maternal factors as the most important influence on self

reported mental health among this sample of mothers. Findings suggest that service changes

that provide mothers with information about their own health and need for health

enhancing activities, as well as education that empowers mothers to manage and master

their child’s disability and needs, may contribute to maternal mental health and well being.

� 2012 Elsevier Ltd. All rights reserved.

1. Introduction

Social models of childhood disability emphasize the importance of the physical, cultural, social, economic, and attitudinalcontext within which the child lives as a key in determining a child’s access to life enhancing opportunity (Colver, 2005;

* Corresponding author. Tel.: +61 3 9904 4171.

E-mail address: Helen.Bourke-Taylor@monash.edu (H. Bourke-Taylor).

0891-4222/$ – see front matter � 2012 Elsevier Ltd. All rights reserved.

http://dx.doi.org/10.1016/j.ridd.2012.04.011

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–1740 1733

World Health Organization, 2001). The World Health Organization (WHO) International Classification of Functioning,Disability and Health (ICF) (World Health Organization, 2001) conceptualized the influence of environmental and personalfactors on the child’s health, capabilities and participation. Subsequently, research has investigated the relationshipsbetween disability (body structure and function) and what children can and do engage in (activities and participation).Findings largely demonstrate a strong relationship between the child’s environment and their capabilities and participationin the opportunities available in daily life (Colver et al., 2010; Morris, Kurinczuk, Fitzpatrick, & Rosenbaum, 2006; Wright,Rosenbaum, Goldsmith, Law, & Fehlings, 2008). While a child’s functional abilities in areas such as cognition and motor skillsdo directly influence the child’s participation in activities, other demographic and family factors such as low income, singleparent status, and lower parent education are also strongly related (Law et al., 2006; McGuire, Crowe, Law, & VanLeit, 2004;Morris et al., 2006; Wright et al., 2008). These findings indicate that children with disabilities rely on a well resourced andhelpful environment, and suggest that supports to the people around such children may be as crucial as therapeutic oreducational opportunities that assist their skill development and inclusion.

One of the most influential human supports in the lives of most children with a disability is his or her mother. Mothers arethe primary caregiver and person responsible for the child’s daily needs, health, development and participation in over 95%of family situations (Brehaut et al., 2004; Crowe & Florez, 2006; Montes & Halterman, 2007; Raina et al., 2005; Thyen,Kuhlthau, & Perrin, 1999). From birth, most mothers enable the child’s participation in activities, provide or accessspecialized care and developmental opportunities and encourage the child’s identity and inclusion within the family andcommunity. However, while the duties of mothers who care for a child with a disability call for the highest level of health,research consistently shows that many mothers report poor subjective mental health and, or high stress (Bailey, Golden,Roberts, & Ford, 2007; Singer, 2006). Population studies (Montes & Halterman, 2007), cross sectional studies of the families ofchildren with the most prevalent childhood disabilities (Bailey et al., 2007; Brehaut et al., 2004; Raina et al., 2005; Singer,2006), and biomedical studies now provide irrefutable evidence that some mothers experience very high stress levels,potentially making them more susceptible to depression and anxiety, and cellular ageing beyond their years (Epel et al.,2004). Implicit in the findings of this body of research, is the fact that some mothers do well and do not experience chronichigh levels of stress or mental health conditions. Therefore, research that promotes understanding about why some mothersdo well, while others do not, can help the development of strategies and services to assist mothers who are more in need ofassistance.

Paediatric practitioners have a vested interest in the health status of mothers who care for children with significantdevelopmental disability due to the benefits of family based care. Although caregiver health is considered a women’s healthissue (Black, 2007; Carers Australia, 2005; Spector & Tampi, 2005), professionals who work with children and their familiesare in the best position to describe care responsibilities, as they are privy to the real day to day duties that mothers performfor, and on behalf of, their child. Caring for a child with a disability is frequently a life-long role for mothers. The mentalhealth issues experienced by mothers of children with disabilities have been assumed to be due to grief and sadness relatedto the child’s disability (Green, 2007). This assumption may have effectively prevented investigations into supports, and mayhave diverted attention from the development of responsive services that may be instrumental in assisting mothers tosustain both their caregiving role and their own health and well being. Paediatric practitioners are unique in theirunderstanding of the extent, specialized and relentless nature of caring for a growing child with a disability. Research isneeded to determine factors that promote resilience for mothers and lead to the development of effective ways to supporttheir caring responsibilities within the family and community.

Few studies have investigated the relative influence of child characteristics or factors related to the disability, and factorsrelated to the mother and family, on maternal mental health when there is a child with a disability in the family. The researchquestions were:

1. E

xplore the child related factors associated with self reported maternal mental health. 2. E xplore the mother related factors associated with self reported maternal mental health. 3. E xplore which factors about the family’s environment are associated with self reported maternal mental health status. 4. O verall, determine factors about the child, mother and environment that best predict maternal self reported mental health

in this cross sectional study.

2. Methods

This paper reports on the quantitative findings from a mixed methodology research project that sought to investigate thehealth and situation of mothers of school children, aged 5 years through 18 years, in Victoria, Australia. Mixed methodologywas adopted to investigate the self reported mental health of mothers and factors that influenced mothers. The theoreticaladvantages of combining qualitative and quantitative methodologies provided the framework to measure and investigatepredicative factors associated with maternal mental health in this three year research project (Borkan, 2004; Creswell,Fetters, & Ivankova, 2004; Thomas, 2003). An initial qualitative study (Bourke-Taylor, Howie, & Law, 2010) involvedinterviews and design of instruments, and was followed with a specifically designed mail out survey with follow up phoneinterview. Findings from this research project, including scales that measure the assistance needed by a child with adisability in play and recreation (Bourke-Taylor, Law, Howie, & Pallant, 2009); the mothers’ rating of challenging behaviourexhibited by their child with a disability (Bourke-Taylor, Law, Howie, & Pallant, 2010); descriptive research about maternal

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–17401734

mental health (Bourke-Taylor, Howie, Law, & Pallant, 2012); the mothers participation in paid work (Bourke-Taylor, Howie,& Law, 2011); and health promoting activity have been described elsewhere (Bourke-Taylor, Law, Howie, & Pallant, 2012).This study was approved by the La Trobe University Health Science Faculty Ethics Committee. All participants returnedinformed consent with the mail out questionnaire.

2.1. Recruitment of participants

The recruitment strategy was designed to reduce bias in the sample, and optimize the variation among mothers and theirchildren. The research was independent and unaffiliated with any service involved with children with a disability or theirfamily members. Inclusion criteria required that the mother was the primary carer of a school aged child with adevelopmental disability; resident in the state of Victoria, Australia; and able to complete the survey in English. Definition ofdevelopmental disability was determined as any diagnosis accepted by the Australian Government department thatprovided weekly subsidies to families of children with disabilities. Recruitment occurred over a ten-month period in 2006/7.The research notice invited volunteers to a study ‘‘to investigate factors that affect the health of Victorian mothers of a childwith a disability’’.

The mail out survey study was advertized via not for profit disability state agencies that advocated for children withdisabilities (i.e. Down Syndrome Association, Association for Children with a Disability). To increase the variability amongparticipants, mothers who contacted the researcher and agreed to participate were also invited to ‘recruit a friend’, who fitthe inclusion criteria. This strategy was used to increase the participation of mothers who may have been less active on theinternet or in disability support groups.

2.2. Measures

The mail out survey included demographic data, questions about paid work status, beliefs about how mothers’ healthaffected caregiving; services and assistive devices used by the child; and specifically designed or selected scales (see Table 1).Two questions were dedicated to services received by the child and services needed but not available/received by the child.Services were presented in a table requiring participants to make selections and included paediatricians, other specialistmedical consultants, specialist nurses at home, occupational therapists/speech language pathologists/physiotherapists

Table 1

Characteristics measured by instruments included in survey and the concepts that were measured.

Characteristic

measured

Instrument Format of scale/questionnaire Concept measured from mothers

perspective

Child related Pediatric Health Related Quality of

Life Version 4.0 Parent Report

(Peds QL 4.0 Parent report)

Twenty-three item likert scale with

five subscales: Physical summary

score, emotional, school, social

functioning and overall psychosocial

summary score.

Extent of problems that child

experiences in daily life as

indicator of quality of life.

Pediatric Evaluation of Disability

Inventory, Parts II and III (PEDI)

Twenty item scale that measures the

type and amount of assistance

needed during self care, mobility

and social functioning (Part II) and

modifications (Part III).

Extent of assistance that the child

needs during daily activities

(self care, mobility and social

functioning).

Assistance to Participate Scale (APS) Eight item scale with typical

play/recreation activities for

children and five point criterion

response items.

The extent of assistance that the

child needs to participate in play

and recreation.

Child’s Challenging Behaviour Scale

(CCBS)

Eleven item scale with items describing

challenging behaviours and response

items have strongly agree to disagree

likert response.

Extent of challenging behaviours

exhibited by child during daily life.

Mother related Short Form 36 Health Survey

Version 2 (SF-36v2) Mental Health

Component Score (MCS)

Thirty-six item scale with varied

response items.

Subjective maternal health status,

including summary of subjective

mental health in relation to

other women.

Family Empowerment Scale: Family

Subscale (FES-FS)

One twelve item likert psychometrically

sound subscale, derived from overall

thirty-six item scale.

Extent that mother experiences

self efficacy and empowerment

over managing their child’s

disability and needs and family

matters.

Health Promoting Activities Scale

(HPAS)

Eight items and seven response items to

report frequency that person participates

as response items.

Frequency that mother participates

in health promoting leisure activities.

Environment

related

Family Environment Scale:

Cohesion subscale (FES-CS)

Nine item subscale from ninety item

likert scale with ten psychometrically

sound subscales.

Extent of family cohesion that

demonstrates how well mother is

helped and supported in the family.

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–1740 1735

(school based or private clinic), psychologists, school based special educators, case managers and dentists. The total ofservices received and mothers’ knowledge of services needed and not received (unmet service needs) was calculated.

A total of eight scales were used. Five pre-existing scales where selected because of stellar development and excellentpsychometric properties, many research externally validating research articles, and low participant burden (see Table 1 forformat). Three scales were developed specifically for the research and initial evaluations of psychometric properties areexcellent. Maternal subjective health was measured using the Short Form 36 version 2 (SF-36v2) (Ware, Kosinski, & Dewey,2002). The SF-36v2 is a psychometrically sound and widely used scale that has been validated for use in Australia in one largestudy (Hawthorne, Osborne, Taylor, & Sansoni, 2007). The SF-36v2 yields eight domain scores: 10 items in the physicalfunctioning (PF) scale; 4 items in the role physical (RP) scale; 2 items in the body pain scale (BP); 5 items in the general health(GH) scale; 4 items in the vitality (VT) scale; 2 items in the social functioning (SF) scale; 3 items in the role emotional (RE)scale; and 5 items in the mental health (MH) scale. Two overall summary norm based component scores are derived,including the Mental Health Component Score (MCS). The MCS was scored as specified in the manual, although usingAustralian weightings to allow population comparisons (Hawthorne et al., 2007).

Other scales were included in the questionnaire to measure specific child, maternal or environmental characteristic (seeTable 1). The mail out survey also included the Pediatric Quality of Life Parent Report questionnaire (Peds QL, Varni, Seid, &Kurtin, 2001); the Family Empowerment Scale: Family Subscale (FES-FS, Koren, De Chillo, & Friesen, 1992); the Cohesionsub-scale of the Family Environment Scale (FES-CS, Moos & Moos, 2002); the Pediatric Evaluation of Disability Inventory,Parts II and III (PEDI, Haley, Coster, Ludlow, Haltiwanger, & Andrellos, 1992); the Assistance to Participate Scale (APS, Bourke-Taylor et al., 2009); the Child’s Challenging Behaviour Scale (CCBS, Bourke-Taylor, Law, et al., 2010); and the HealthPromoting Activities Scale (HPAS, Bourke-Taylor, Law, et al., 2012). The HPAS, developed for this project, measures thefrequency that mothers participate in health promoting activities such as spending time with socially supportive others,engaging in active or relaxing recreational pursuits, time alone, and time spent managing ones health, planning food andexercise routines.

2.3. Data analysis

SPSS Version 18 was used to generate descriptive statistics for all variables. The statistical analyses were conducted inthree stages. In stage one Pearson correlations and independent t-tests were used to identify those variables that were eithersignificantly correlated (for continuous variables, e.g. age) with SF-36 MCS scores or showed significantly different scoresbetween groups (for categorical variables, e.g. mother in paid work Yes/No). In stage two those variables identified as havinga significant association with SF-36 MCS scores were included in a series of standard multiple regression analyses. This wasdone to assess the ability of (a) child-related factors, (b) mother-related factors and (c) environmental factors to predictscores on the SF-36 MCS scores. Finally in stage three, to assess the joint influence of all factors, a standard multipleregression analysis was conducted, incorporating all of the child-related, mother-related, and environmental factors,identified as significant at stage two.

Preliminary analyses were conducted to ensure no violation of the assumptions of normality, linearity, multicollinearityand homoscedasticity (Tabachnick & Fidell, 2007). The number of predictor variables used in the final model was seven,requiring a minimum sample size of 106 (Tabachnick & Fidell, 2007). The current sample size of 152 exceeded this value.

3. Results

3.1. Participant characteristics

The principal researcher was contacted by 180 mothers and 152 returned the questionnaire and participated in the followup phone interview (response rate = 84%). The characteristics of mothers and their children are presented in Table 2. Abouthalf (56%) of mothers had a tertiary qualification. Most (84%) were married/de facto. Half (51%) reported that they had beendiagnosed with a mental health condition. As derived by mothers subjective health report on the SF-36v2 questionnaire,maternal mental health was significantly below other Australian women (see full description in Bourke-Taylor, Howie, et al.,2012).

Children, aged from 5 to 18 years, had a range of conditions: physical disability (34%); autism spectrum disorder (62%);and additional psychiatric diagnoses (20%) (see Table 2). Mothers reported up to six diagnoses or conditions pertaining totheir child with a disability. Thirty-seven (24%) children had a single diagnosis; 47 children (31%) had 2 diagnoses listed; 27children (18%) had 3 diagnoses listed; 18 children (12%) had 4 diagnoses listed; 9 children (6%) had five diagnoses listed; and14 children (9%) had six diagnoses listed. Children required extensive assistance from their mother for many daily activities—play and leisure, self care, mobility and social function (reported elsewhere, see Bourke-Taylor et al., 2009).

3.2. Factors associated with maternal mental health

To identify factors associated with mothers’ subjective mental health, a series of correlation analyses were completed (forcontinuous factors), and t-tests (categorical factors) were conducted. Table 3 shows the descriptive statistics for each of thepredictor variables and the results of the t-tests or Pearson correlation coefficients calculated.

Table 2

Characteristics of participants (N = 152) and their child with a disability.

Characteristics Participant status (N = 152)

Age mean (SD) 41.7 years (SD = 5.4)

Education status

Primary 2 (1%)

Secondary 65 (43%)

Post secondary/degree 54 (36%)

Postgraduate 31 (20%)

Relationship status

Married/de facto 127 (84%)

Separated/divorced/widowed 15 (10%)

Single 6 (4%)

Mothers reporting mental health condition (n = 78)a

Number of mothers agreeing that their own health interferes with care of child

Yes 75 (49%)

No 77 (51%)

Child’s age (range 5–18 years) 9.5 years (3.7)

Child’s gender

Male 104 (68%)

Female 48 (32%)

Child’s school (n = 150)

Mainstream primary or secondary 67 (45%)

Special/developmental school 83 (55%)

Most common childhood disability/condition

Physical disability

Total 51 (34%)

Cerebral palsy 29 (19%)

Autism spectrum disorder

Total 94 (62%)

Autism 69 (45%)

Asperger syndrome 25 (17%)

Other

Developmental delay 26 (17%)

Intellectual disability 46 (30%)

Language disorder 15 (10%)

Epilepsy 20 (13%)

Additional childhood psychiatric diagnosis

Total 31 (20%)

ADHD 19 (12%)a Mother may have more than one mental health condition, see reference Bourke-Taylor, Howie, et al. (2012).

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–17401736

Among the child related factors (see Table 3) significant correlations with reported mental health (SF-36v2 MCS) werefound with the Child’s Challenging Behaviour Scale (r = �.33, p < .001); Peds QL Emotional Function scores (r = .37, p < .001);and Peds QL Psychosocial health (r = .36, p < .001). Mothers with a child diagnosed with an ASD reported poorer mentalhealth (M = 30.03) than those who did not (M = 34.64, p = .047).

Within the mother-related factors, MCS scores were found to be associated with scores on the FES-FS (r = .40, p < .001)and the HPAS (r = .46, p < .001). Mothers who were not in paid employment, and those that indicated that their healthaffected their ability to care for their child, also reported significantly lower MCS scores (p = .03 and p < .001 respectively).

Among the environmental factors (see Table 3) mothers with a preschool aged child recorded poorer mental health scores(p = .003). Better self reported mental health (higher MCS scores), was weakly associated with better family cohesion (r = .23,p = .006) and moderately associated with mothers’ perception that their child’s service needs were met (r = �.29, p < .001).

3.3. Determining relative influence of factors associated with maternal mental health

In this second set of analyses those variables found to be significantly associated with mothers’ MCS scores in the previoussection were entered into a series of standard multiple regression analyses. These multivariate analyses allowed anassessment of the unique predictive power of selected child-related factors, mother-related factors and environmentalfactors, while controlling for other variables in the model. The Peds QL Psychosocial health score was not included as it iscalculated by summing three subscales, already included in the model (e.g. Emotional Function subscale).

The two child-related factors (Peds QL Emotional Function, CCBS) explained 15.8% of the variance in MCS scores, withboth factors being significant in the equation (see Table 4). Mother-related factors explained 31.2% of the variance, with FES-FS and HPAS scores reaching statistical significance. Mothers’ work status did not contribute any additional uniquepredictive power. Among the environmental factors both FES-CS scores and the ‘number of services not received’ providedunique contribution to the prediction of MCS, explaining a total of 11.5% of the variance.

The final multiple regression analysis, to assess the joint influence of all factors on mothers’ mental health, incorporatedall child-related, mother-related, and environmental factors identified as significant in the previous analyses. The model as a

Table 3

Summary of child, mother and environment characteristics, instruments used to measure concepts and their association with mothers’ mental health

measured using the Short Form 36, Mental Health Component Score.

Characteristic measured Mean (standard deviation) t (df) Correlation (r) p

Child relatedAge 9.5 years (3.7) .05 .58

Pediatric Quality of Life 4.0 Generic Core Scales Parent Report (Peds QL)

Total score 44.8 (15.5) .29 <.001

Peds QL physical health summary score 46.0 (27.1) .06 .45

Peds QL psychosocial health summary score 44.2 (16.3) .36 <.001

Peds QL school function 46.8 (21.8) .26 .001

Peds QL social function 38.4 (21.2) .19 .02

Peds QL Emotional Function 47.5 (21.6) .37 <.001

Pediatric Evaluation of Disability Inventory (PEDI) Caregiver scales

PEDI self care domain 52.6 (24.4) �.08 .32

PEDI mobility domain 70 (29.4) �.13 .13

PEDI social function domain 44.2 (21.8) .004 .97

Assistance to Participate Scale (APS) 26.8 (7.8) .02 .81

Total number of assistive devices (range 0–10) 4.2 (2.3) .09 .30

Child’s Challenging Behaviour Scale (CCBS) 34.4 (9.3) �.33 <.001

Child diagnosed with an ASD

Yes n = 94 30.03 (13.5) 2.00 (150) .047

No n = 58 34.64 (14.1)

Mother relatedAge 41.7 years (SD = 5.4) .15 .07

Family Environment Scale-Family 45.07 (6.48) .40 <.001

Health Promoting Activities Scale (HPAS) 21.67 (8.57) .46 <.001

Mother participates in paid work

Yes n = 83 34.0 (12.9) �2.17 (150) .03

No n = 69 29.1 (14.7)

My health affects my ability to care for my child

Yes n = 75 27.6 (14.1) �3.79 (150) <.001

No n = 77 35.8 (12.6)

Environment related: family and service factorsPreschool aged child in family

Yes n = 36 25.8 (12.5) 3.03 (150) .003

No n = 116 33.6 (13.8)

More than one child with a disability

Yes n = 35 28.1 (12.0) 1.82 (150) .07

No n = 117 32.9 (14.3)

Family Environment Scale-Cohesion 6.19 (2.45) .23 .006

Husband/partner identified as main life support

Yes n = 53 33.8 (14.9) �1.31 (150) .19

No n = 99 30.7 (13.3)

Family income $59,104 (SD: $31,011) .09 .30

Services received by child 7.58 (3.78) .06 .460

Services needed but not received by child (unmet service need) 3.29 (2.81) �.29 <.001

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–1740 1737

whole explained a total of 37.1% of the variance, with four factors being significant in the final equation (Peds QL EmotionalFunction, FES-FS, HPAS and services not received). The strongest unique predictors were mother-related factors: thefrequency that mothers participated in health promoting activities (HPAS scores); and the mothers’ sense of empowermentover family matters (FES-FS scores). To a lesser extent, both Peds QL Emotional Function and ‘services needed but notreceived’ provided unique predictive power (see Table 4).

4. Discussion

A diverse group of Victorian mothers volunteered to participate in this study. Most children had more than one diagnosisor medical condition (76%) and were described by their mother as requiring a high level of care to participate in self care,mobility, social opportunities and play or recreation. Participants in this study generally reported poor overall mental health,with scores on the SF36 MCS more than two standard deviations below other Australian adults and in the ‘poor range’ forAustralian women (see Bourke-Taylor, Howie, et al., 2012). A number of factors associated with the child, mother andenvironment were identified to have significant correlations with mothers’ mental health.

4.1. Child, mother, environment factors associated with subjective maternal mental health

The only statistically significant child related factors associated with maternal mental health, were the child’s behaviourand emotional well being. Consistent with other reported studies (Singer, 2006), mothers of children with ASD reported

Table 4

Regression analyses predicting mothers’ mental health from child-related, mother-related and environmental factors.

R squared Significance of model Beta Significance of predictors

Model 1: Child related factors .158 F(2,148) = 13.87 p < .001

Peds QL Emotional Function .264 t = 2.85, p = .005

CCBS �.181 t = �1.95, p = .05

Model 2: Mother related factors .312 F(3,148) = 22.39 p < .001

FES-Family .291 t = 4.09, p < .001

HPAS .383 t = 5.45, p < .001

Paid work .107 t = 1.55, p = .122

Model 3: Environmental factors .115 F(2,147) = 9.52 p < .001

FES-Cohesion .175 t = 2.22, p = .03

Services not received �.258 t = �3.27, p = .001

Model 4: All factors combined .371 F(7,141) = 11.86 p < .001

Peds QL Emotional Function .202 t = 2.30, p = .02

CCBS .067 t = .70, p = .49

FES-Family .284 t = 3.53, p = .001

HPAS .300 t = 4.02, p < .001

Paid work .109 t = 1.57, p = .12

FES: Cohesion subscale .007 t = .09, p = .93

Services needed but not received by child (unmet service need) �.157 t = �2.24, p = 03

FES = Family Empowerment Scale; Peds QL = Pediatric Quality of Life scale; CCBS = Child’s Challenging Behaviour Scale; HPAS = Health Promoting Activities

Scale.

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–17401738

poorer mental health than other women. Other child related factors measured in this study, including a child’s need forassistance in mobility, self care or play and recreation, or need for assistive technology, had no significant impact on maternalmental health.

The child’s emotional functioning and mothers’ report of challenging behaviour explained 15.8% of the variance inmaternal mental health. These results are consistent with previous findings that support a relationship between thebehaviour of children with a disability and maternal mental health (Brehaut et al., 2004; Butcher, Wind, & Bouma, 2008;Feldman et al., 2007; Hastings, Daley, Burns, & Beck, 2006; Singer, 2006; Tomanik, Harris, & Hawkins, 2004). However, thecurrent findings indicating no substantial relationship between the extent of the child’s disability and need for care, andmaternal mental health is unique. These findings suggest that other factors associated with the caring role are more salient.

Statistically significant mother related factors measured in this study were mothers’ sense of empowerment managingtheir child’s disability, needs and family matters; participation in health promoting activities; participation in paid work;and the mothers’ self recognition that caring was affected by health. Of these mother related factors, the only significantfactors that predicted subjective maternal mental health were participation in health promoting activity, and mothers selfempowerment, jointly explaining 31.2% of the variance in SF36 MCS.

To our knowledge, no other studies have investigated the relationship between subjective mental health andparticipation in activities that support health (active and passive recreational pursuits, time with socially supportive others,time out, spiritually rewarding activities and actively planning menu, exercise and healthy lifestyle choices). The HPAS wasdeveloped as part of a broader research programme, to allow measurement of this previously unstudied aspect of mothers’daily life. Maternal empowerment (as measured by the FES-FS) assesses beliefs and knowledge about understanding thechild’s condition or disability; management of problems and issues; competence helping their child and keeping family lifeunder control. Previous research has identified the relationship between maternal empowerment and mothers reportedmental health (Brehaut et al., 2004; Raina et al., 2005). Other research has highlighted maternal empowerment withresilience and caregiver health (Feldman et al., 2007; Nachshen & Minnes, 2005; Shu & Lung, 2005).

Several environmental factors measured in this study were significantly associated with maternal mental health. Motherswith a preschool aged child, as well as a school aged child with a disability, reported significantly poorer mental health.Mothers’ perceptions of the cohesiveness of their families were correlated weakly with mental health scores in this study.Family income and the number of services needed by a child (indicating extent of disability and associated conditions) didnot correlate with self reported maternal mental health. However, the number of services that the child needed, but did notreceive (unmet service needs), correlated moderately.

4.2. Strongest relative predictors of subjective maternal mental health

When factors selected from the preliminary child, mother and environment regression analyses were entered into thefinal regression model, there were four factors that predicted 37.1% of the variance in self reported maternal mental health.The strongest unique predictors were: participation in health promoting activities; maternal empowerment over theirchild’s disability, needs and family matters; the child’s emotional functioning; and the child’s unmet service needs.

The results of this study suggest that participation in health promoting activities may make an important contribution tothe maintenance of mothers’ mental health. These findings suggest that time management, prioritization of oneself, sharedcaring of the child with supportive others that results in time for the mother to care for herself, may all be crucial to maternal

H. Bourke-Taylor et al. / Research in Developmental Disabilities 33 (2012) 1732–1740 1739

well being. It has been well documented that many mothers of children with disabilities experience significant restrictionson time available for themselves (Crowe & Florez, 2006).

Previous research has described the behaviours that mothers identified as helpful to pursuit of health promotingactivities (Bourke-Taylor, Howie, et al., 2010). Mothers who participated in health promoting pursuits more regularly wereorganized, had social supports, had respite care, and had supportive spouses who shared care of the child with a disability.Service providers and policy makers may contribute by promoting services and supports that will enable mothers the freetime to make healthy lifestyle choices. Paid in-home or out-of-home respite care, after or before school care and holidayprogrammes, education for mothers about their own health and well being, and family centred service provision are allimportant aspects of the services available to a school aged child and their family. This research suggests that such initiativesshould be expanded or made available to families.

The second strongest predictor of subjective maternal mental health was maternal empowerment. Mothers needinformation about their child’s condition, service needs, and accommodating their child’s needs within daily family life. Astrong sense of empowerment assists mothers to manage problems, organize support within the family and gain control overfamily life. Education and information sharing strategies for mothers via handouts or a parent education kits such as ‘‘KIT-keeping it together’’ kit (Stewart et al., 2006) may be helpful. Mothers who believe that they can navigate the service systemindependently and successfully on behalf of their child have a stronger sense of empowerment. Further research is necessaryto determine appropriate ways to better adapt services and service systems to promote self efficacy and empowerment inmothers of children with disabilities.

The only child related factor that had predictive power in the final model of mothers’ mental health was the child’semotional functioning. The tool used to measure emotional function in the child was the mothers’ rating of how afraid,scared, sad, angry or worried the child was and whether they experienced trouble sleeping. These findings suggest that achild’s happiness and confidence are linked to a mothers’ overall mental health, although the causal direction of thisrelationship cannot be determined in this cross sectional study. These results suggest that more attention might be directedtowards evaluating and ensuring the emotional wellbeing of children with disabilities within health and education settings.Future research might investigate ways to assist children with poor emotional functioning, and the development of effectiveprogrammes that support the emotional well being of such children.

The fourth factor that predicted mothers’ mental health in this study was the child’s unmet service needs. Unavailableservices such as school based occupational therapy or speech pathology, community based psychology or a local paediatrician isproblematic for mothers as well as their children. The ability of a mother to successfully advocate for her child and locate, accessand retain services directly influences the child’s access to services. Advocating for children’s services is a frequently cited andmajor occupation of the mothering role (Llewellyn, Thompson, & Whybrow, 2004). Mothers need to learn how to advocate andto receive professional advice about what their child needs. Recommendations for services and policy include the provision ofeducation packages that provide the mother with specific information about the child’s service needs; written information andadvice about successful navigation of the disability service system/education system/medical system; and information aboutdisability support groups or organizations that will provide additional information.

Limitations of this research include lack of verification of children’s diagnoses and external clarification of motherdiagnoses. Although the sample of children described by their mothers was very diverse (numerous different diagnoses)potential bias due to a larger sample of mothers of children with ASD must be acknowledged. ASD is the most commonchildhood disability, occurring in one in 160 children in Australia (MacDermott, Williams, Ridley, Glasson, & Wray, 2007),and therefore the larger sample from this population was expected. Similarly there were a high number of educated andpartnered mothers, limiting generalizability of findings. The cross sectional design utilized in this research does not allowdetermination of the causal direction of relationships among the variables, or the prediction of longitudinal findings.However the results do indicate that there are important relationships between maternal behaviours, activities andresponsibilities, and maternal health and well being. These relationships require further investigation in other exploratoryresearch, as well as in longitudinal and evaluation research. This study relied on maternal self report to better understandtheir perceptions and experience. Future research might research the perspectives of siblings and fathers as well.

This study suggest that there are a number of factors that influence maternal mental health and well being when there is achild with a developmental disability in the family. Although future research may establish more about the nature ofrelationships and identify the most crucial services, activities and strategies that will assist mothers, this paper offers severalsalient messages. Maternal empowerment; maternal participation in healthy activities; the child’s emotional health; and thechild’s unmet service needs all appear to be very important aspects of a mothers’ daily life and emotional wellbeing.Paediatric services would be well informed to tailor services that accommodate the mothers’ health needs, and facilitate thecapacity of families to fulfil the caregiving role with which they have been charged. Health services aimed directly atmaternal health and well being are also indicated. Mothers are very important in the lives of children with disabilities andtheir families.

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