Article

Young Peoples Health

The mental health of Australian mothers and fathers of young children at risk of disability
Eric Emerson and Gwynnyth Llewellyn
Faculty of Health Sciences, University of Sydney, New South Wales

Abstract
Objectives: To: (1) determine the strength of the relationship between risk of child disability and parental mental health in a nationally representative sample of Australian families with young children; (2) estimate the contribution of distress among parents of children at risk of disability to overall parental psychiatric morbidity; and (3) explore the extent to which between-group differences in parental mental health may be attributable to differences in exposure to other risk factors. Method: Secondary analysis of crosssectional data collected in Wave 1 of the Longitudinal Study of Australian Children (n=4,983; 6.5% of children identified as being at risk of disability). Results: Elevated rates of psychological distress indicative of serious mental illness were found among mothers (OR=5.1, 95% CL 3.5-7.6), but not fathers (OR=1.4, 95% CL 0.5-3.4) of children at risk of disability. Psychological distress among mothers of children at risk of disability accounted for 23% of estimated total maternal psychiatric morbidity. Approximately 50% of the elevated risk of distress for mothers was accounted for by increased rates of poverty among children at risk of disability and their families, an association possibly mediated by increased exposure to adverse life events, poorer maternal health and reduced personal-social capital. Conclusions: The association between risk of child disability and maternal mental health is strongly confounded by increased rates of poverty among children at risk of disability. Any residual risk appears to be related to the poorer social, emotional and behavioural development of children at risk of disability. Social and health policy responses need to focus on poverty reduction, enhancing the personal social capital of mothers living in poverty and on improving the social, emotional and behavioural development of the children. Key words: Mental disorders; disabled children; poverty; maternal health; social support; life change events.
(Aust N Z J Public Health. 2008; 32:53-9) doi:10.1111/j.1753-6405.2008.00166 .x

umerous studies have reported elevated levels of psychological distress among the mothers and, to a lesser extent, fathers of children with intellectual disabilities (mental retardation), developmental disabilities (e.g. autistic spectrum disorder), physical disabilities (e.g. cerebral palsy), child mental health problems, traumatic brain injury and chronic health conditions (e.g. cancer, epilepsy).1-11 Elevated rates have been reported across a range of social and cultural contexts including minority ethnic communities in high-income economies4,7,12 and majority ethnic communities in middle-income economies.1,13,14 The association between child disability and maternal distress is of particular concern as maternal mental health has been identified as a significant public health issue because of its association with well-being, health and role functioning, including less-thanoptimal parenting practices associated with poorer child outcomes.15-21 As such, it appears likely that a group of children whose development, health and well-being are already compromised may be at increased risk of exposure to parenting practices that will further jeopardise their development. Several factors have been identified as being related to the prevalence of psychological distress within the population of parents of disabled children. These include: child factors such as age, gender, type of disability, caregiving burden, the presence of externalising behaviour problems and emotional disorders; parental factors such as personality traits and coping styles; and
Submitted: May 2007

social factors such as marital harmony, social support and socio-economic position.110,12,13,22,23

While relatively extensive, the existing literature is flawed on three counts. First, the majority of studies are based on small, unrepresentative convenience samples. For example, a recent meta-analysis of studies published between 1984 and 2003 investigating depression among mothers of children with and without intellectual or developmental disabilities identified only two studies in which participants were drawn from large population-based samples.5 Second, the majority of studies have investigated the statistical significance of between-group differences in mean scores on scales of psychological symptoms associated with distress. Rarely have these studies reported either the effect sizes associated with such differences or the percentage of participants who reach the cut-off points on such scales indicative of psychiatric disorder.5 Finally, research in this area has been dominated by psychological models that have primarily focused on the impact of proximal stressors (e.g. child behaviour) within the context of the psychological and, to a much lesser extent, social resources available to parents. Little serious attention has been paid to the possible role of broader social determinants of health (e.g. poverty) in accounting for between-group differences in parental mental health.24 The objectives of the present study are to: (1) determine the strength of the relationship between child disability and parental distress in a nationally representative sample of
Accepted: September 2007

Revision requested: August 2007

Correspondence to: Professor Eric Emerson, Institute for Health Research, Lancaster University, Lancaster LA1 4YT, United Kingdom. Fax: +44 (0)1524 592 401; e-mail: eric.emerson@lancaster.ac.uk

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Australian families with young children; (2) estimate the contribution of distress among parents of disabled children to overall parental psychiatric morbidity; and (3) explore the extent to which any between-group differences in parental distress may be attributable to differences in exposure to non disability-specific risk factors (e.g. low socio-economic position, adverse life events, lower levels of social support).

of serious mental health disorder.30 These data were collected by written self-completion questionnaire separately from the childrens mothers and, where present, fathers.
Children at risk of disability

Materials and Methods

The present report is based on secondary analysis of crosssectional data collected in Wave 1 of the Longitudinal Study of Australian Children (LSAC). Full details of LSAC are available in a series of annual reports,25 a data user guide,26 and a series of technical reports addressing sample design,27 data weighting,28 and the development of the LSAC child outcome index.29 Relevant details are briefly summarised below.

Sampling
LSAC employed a stratified cluster design to recruit two samples of children: a B-cohort of infants (data not used in the present study) and a K-cohort of children aged 4-5 years (born March 1999 to February 2000). The sample was stratified and clustered by postcode to ensure proportional geographic representation. Postcodes were selected with probability proportional to size with equal probability for small population postcodes. Within the selected 311 postcodes, children were selected at random from the Medicare enrolment database. The overall response rate was 59% for the K-cohort, giving a final sample of 4,983 children.

Current approaches to defining disability stress the role of social and environmental conditions in determining whether particular variations in bodily structures or behaviour variations result in disability.33 This approach poses difficulties for survey research, which seeks to identify and count the number of disabled people.34,35 A partial solution to this difficulty is to attempt to identify people (in this case children) whose physical, behavioural or intellectual characteristics are likely to result in them being made disabled and socially excluded in contemporary Australian society.36 LSAC contains three scaled measures (child behaviour, child physical health and development, child learning and cognition) derived from a series of items and scales related to each domain.29 Child behaviour was evaluated with the Strengths
Table 1: Selected characteristics of children at risk of disability and their families.
Children at Children not risk of at risk of disability disability
Child: male genderc Child Aboriginal or Torres Strait Islanderc Lone parent familyc Mothers age (mean)
b

66% 8% 25% 33.5 37.8 1.7 46% 28% 33% 36% 35% 86% 39% 25%

50% 4% 13% 34.6 37.4 1.5 24% 12% 21% 49% 57% 93% 26% 9%

Procedure
Data were collected by: (1) face-to-face interview with the childs primary parent (the childs biological mother in 97% of cases); (2) written self-completion questionnaire completed by the childs primary parent and, for couple families, separately by the parents partner; (3) direct assessment of the child. Data were recoded so that the variables reported were based on parent gender (mother/father) regardless of which parent participated as the primary parent.

Fathers age (mean) Number of siblings resident in household (mean)a Income povertyc Hardship: lacks 3+ itemsc Area Deprivation (SEIFA disadvantage lowest quintile)c Mothers education (completed Year 12)c Mother employed
c

Measures
LSAC collects a range of information pertaining to: household composition; housing conditions; finances; parent education, employment, health and well-being; parents relationship history, including relationships with non-resident partners; parenting practices; child health, well-being and development; social support and social capital.26 Key measures for the analyses in the present paper are described below.
Parental mental health

Father employed
c

Mother has disability or limiting long-standing illnessc Mothers self-rated health less than goodc

Maternal and paternal mental health were evaluated through use of the K6 scale, a six-item measure of non-specific psychological distress over the preceding month.30,31 The K6 has been shown to have excellent sensitivity and specificity for the detection of serious mental illness, outperforming the GHQ-12,32 WHO-DAS and CIDI-SF.30 A summed scale score of 13 or greater (full scale range 0-24) was used to identify psychological distress indicative
54

Parent 1 has less-than-monthly contact with . . . Own parents 13% Own siblings 19% In-lawsb 38% Other family members 47% Own friendsc 15% Neighboursa 31% Mean number of types of life events over past yearc
Notes: (a) p<0.05. (b) p>0.01. (c) p<0.001.

10% 20% 30% 46% 7% 26% 1.6

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and Difficulties Questionnaire. 37 Child physical health and development were based on parental responses to the Pediatric Quality of Life Inventory,38 overall parental rating of child health, and child Body Mass Index. Child learning and cognition was based on child testing on the Peabody Picture Vocabulary Test,39 the Who Am I? test of school readiness,40 and ratings of child numeracy and literacy. We operationally defined a child as being at risk of disability if they fell within the bottom 2.5% of the weighted child population in any of these three domains.
Other measures

We extracted from LSAC a number of variables related to poverty, hardship, life events, social support, parental self-rated health and self-reported disability. Income data was equivalised using the modified Organisation for Economic Cooperation and Development (OECD) scale and split into within-sample quintiles. Poverty was defined as living in a household whose equivalised income was less that 60% of the sample median.41 Hardship
Table 2: Candidate variables for multivariate analysis.
Block 1 Block 2 Block 3 Block 4 Block 5 Block 6 (Child disability status) Child at risk of disability (Gender, ethnicity and age) Child gender Child Indigenous status Parental agea Parental Indigenous status (Income, poverty and hardship) Equivalised income quintile Poverty Hardship (Human capital, life events, social support) Lone parent Parental employment (employed, unemployed, not in workforce) Parental education (highest year of schooling completed) Life events reported by primary parent in past 12 months Social support: Less than monthly contact with . . . Own parents Own siblings In-laws Other family members Own friends Neighbours (Parental health and disability) Parents self-rated general health is less than good Parent reports disability/limiting long-standing illness (Child behaviour, learning and health) Score on child outcome domain social and emotional functioninga Score on child outcome domain learning and cognitiona Score on child outcome domain health and physical developmenta

was defined as the number of items that the informant reported happening over the preceding 12 months due to shortage of money from a predetermined list of six (e.g. not being able to pay gas, electricity or telephone bills on time). Exposure to potentially adverse life events over the preceding 12 months was determined by primary informant report to a predetermined list. Frequency of social contact between the primary informant and their parents, siblings, in-laws, other family members, friends and neighbours was rated on a five-point scale (no contact, rarely, a few times a year, at least every month, a least every week, every day). Data were recoded into binary variables (less than monthly/at least every month). Parent self-rated health was assessed by a single item (in general, would you say your own health is excellent/very good/good/fair/poor). Parent disability was assessed by response to a single item (do you have any medical conditions or disabilities that have lasted, or are likely to last, for six months or more?).

Approach to analysis
Unless specified, all analyses were undertaken on data weighted to take account of variations in response rate.28 Initial inspection of the data indicated that parents who were/were not supporting a child at risk of disability differ markedly with regard to exposure to a range of material and psycho-social hazards that may constitute risk factors for psychological distress independent of child disability (see Table 1). As a result, we employed binary logistic regression (SPSS 15.0.1) to identify the unique contribution of risk of child disability to parental mental health when controlling for these potentially confounding effects. Variables were entered in six blocks. In the first block, we entered risk of child disability. In all subsequent blocks we used forward conditional variable entry (p entry <0.05, p exit >0.01) to allow the entry of further variables. Block 2 contained fixed variables relating to child and parental characteristics (e.g. age, gender, Indigenous ethnic status). Block 3 contained variables relating to family income, poverty and hardship. Block 4 contained variables that have been hypothesised to mediate the relationship between socio-economic position and health outcomes (exposure to life events, human capital, personal social capital). Block 5 contained variables related to parental health. Block 6 contained variables related to the actual scores on the three scales used to categorise child disability. Candidate variables are listed in Table 2. It should be noted that the variables in Blocks 3 and 4 were collected solely from the primary informant (primarily the childs mother). In order to maximise sample size while avoiding the imputation of missing data, we adopted an iterative process to the analyses. First we ran the fully specified model with all candidate predictor variables (and hence the most restricted sample size). We then excluded the variable from the candidate variable list that: (1) had not entered into the equation; and (2) had the least significant relationship with the final model. We then reran the analysis and repeated this process until finally arriving at a candidate variable list reduced only to those variables that did meet the criteria for data entry.

Note: (a) Continuous variable, all other variables treated as categorical variables.

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Results
A total of 297 children met the criteria for being at risk of disability (6% of the unweighted sample; 6.5% of the weighted sample). Of these, 95 (32%) met the criteria solely on the physical domain, 86 (29%) solely on the learning domain, and 78 (26%) solely on the behavioural. An additional 33 (11%) children met the criteria on two domains and five (2%) met the criteria on all three domains. Elevated rates of psychological distress indicative of serious mental illness were found among mothers (OR=5.1, 95% CL 3.57.6), but not fathers (OR=1.4, 95% CL 0.5-3.4) of children at risk of disability. Psychological distress among parents of children at risk of disability accounted for 23% of estimated total psychiatric morbidity among Australian mothers of 4-5 year-old children and 7% of estimated total psychiatric morbidity among Australian fathers (i.e. 23% of all mothers who screened positive on the K6 scale were mothers of children at risk of disability). Corrected odds ratios of the association between child disability status and maternal psychological distress are listed in Table 3 at each stage of the analysis and the final model is presented in Table 4. The results presented in Table 3 suggest that increased rates of exposure to poverty among children at risk of disability may account for approximately 50% of the elevated risk for distress among mothers. Poorer maternal physical health accounts for an additional 15% of elevated risk. All residual risk was accounted for by child behaviour (i.e. in the final model child disability is not significantly related to maternal distress). In the final model, the non-significance of variables retained from earlier blocks suggests that their effects may be mediated by variables entered in later blocks. For example, child Indigenous status was moderately associated with maternal distress when entered in Block 2 (OR=2.5, 95% CL 1.3-4.5, p=0.004). This association was reduced to non-significance following entry of
Table 3: Association between risk of child disability and maternal distress.
OR and p
Block 1 Block 2 (Gender, ethnicity and age) Block 3 (Income, poverty and hardship) Block 4 (Life events, social support) Block 5 (Parental health and disability) 5.0c 4.6c 3.1c 2.8c 2.2b

poverty and hardship in the subsequent block, suggesting that the association between child Indigenous status and maternal distress was mediated (or confounded) by increased rates of poverty among Indigenous children. Similarly, poverty and material hardship were moderately to strongly associated with maternal distress when entered in Block 3 (poverty OR=1.7, 95% CL 1.2-2.5, p=0.004; hardship lacking 3+ items OR=7.1, 95% CL 4.5-11.1, p<0.001). The significance of these items was reduced in each subsequent block, suggesting that the effects of poverty and material hardship may be mediated by increased exposure to adverse life events, reduced personal social capital, poorer physical health and poorer child behaviour (social, emotional and behavioural development).

Discussion
Principal findings
Elevated rates of psychological distress indicative of serious mental illness were found among mothers, but not fathers of children at risk of disability. Approximately 50% of the elevated risk of maternal distress was accounted for by increased rates of poverty among children at risk of disability, an association

Table 4: Variables associated with maternal distress. n=3,791 (91% of available data). Model 2=356.4, df=18, p<0.001; Nagelkerke r2=0.32.
Variable
Child at risk of disability Male child Aboriginal/Torres Strait Islander Poverty Hardship (no items lacked) 1 item 2 items 3+ items Maternal employment (employed) Unemployed Not in workforce Life events in past 12 months 0 1 2 3+ Less than monthly contact with . . . Own parents Other family members Own friends Self-rated health less than good Disability/long-standing illness Child behaviour (social/emotional/ behavioural development)
Notes: (a) p<0.05. (b) p>0.01. (c) p<0.001.

OR and p
0.9 1.4 1.8 1.2 1.0 1.4 1.5 2.1b 1.00 2.6b 2.0b 1.0 1.4 2.4a 5.0c 2.0b 1.7b 1.6 3.7c 1.6
a

95% CL
0.5-1.8 0.9-2.0 0.6-3.0 0.8-1.7 0.8-2.5 0.8-2.6 1.2-3.6 1.3-5.0 1.3-3.0

95% CL
3.3-7.6 3.0-7.0 2.0-4.9 1.7-4.4 1.3-3.6 0.5-1.8

% change from Block 1

n/a 10% 48% 55% 70% 103%

0.6-3.0 1.2-5.1 2.5-9.7 1.3-3.2 1.2-2.5 0.9-2.7 2.4-5.5 1.1-2.4 1.0-1.1

Block 6 0.9 (Child behaviour, learning and health)

Notes: (a) p<0.05. (b) p>0.01. (c) p<0.001. Given an OR of 1 is equivalent to complete independence, % change is calculated by (Block 1 - Block t)/(Block 1 -1).

1.1c

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possibly mediated by increased exposure to adverse life events, poorer maternal health and reduced personal-social capital. All residual risk was accounted for by the poorer social, emotional and behavioural development of the child.

Strengths and weaknesses of the study

The main strengths of the study are its use of: (1) a large, nationally representative sample with good response rate; and (2) a robust screening measure to identify participants at risk of serious mental health problems. The main weaknesses of the study are: (1) the operational definition of risk of child disability; and (2) the use of a cross-sectional design. As noted above, disability cannot be construed as an automatic or inevitable consequence of any particular behavioural or physical impairment. There is, however, considerable evidence to suggest that Australian children who have significant functional limitations in the areas of either physical health and development, cognition and learning or social, emotional and behavioural development are at significant risk of disability.42 As such, we argue that functioning at the extreme end of the population distribution in any of these domains places children at significant risk of being made disabled in contemporary Australian society. Confidence in our operational definition of disability is strengthened given that the observed prevalence rate is within the bounds of expected rates of child disability,43 and varies in a predicted manner with child gender and poverty.43 It must be kept in mind that the results of cross-sectional studies cannot provide evidence of causality. This is particularly relevant to the analyses undertaken of the association between social/ environmental factors and the prevalence of parental distress. These associations may reflect the causal influence of social adversity on psychopathology and, as such, would be consistent with the rapidly growing literature on the social determinants of physical and mental health.44,45 They may also reflect the causal influence of mental health on social adversity, or the influence of unmeasured third variables (e.g. genetic factors) on risk of exposure to both social adversity and mental health.

Meaning of the study

The results are consistent with much of the previous literature in reporting high rates of mental health problems among the mothers and, occasionally, fathers of disabled children.2-10 As noted above, maternal mental health has been identified as a significant public health issue,15-17,20 partly due to the association between maternal mental health and the well-being of children.16,18-21 The latter issue is particularly relevant to mothers supporting disabled children. Given that mental health problems among this group of mothers accounts for 23% of all maternal mental health morbidity, addressing the needs of this subgroup of mothers will also be key to achieving the wider objectives of maternal mental health promotion strategies. The results of the present study add significantly to the existing literature in identifying two main factors that may account for the elevated rates of mental health problems among the mothers
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of disabled children. Approximately 50% of the elevated risk of distress could potentially be attributed to increased rates of poverty among disabled children and their families, an association possibly mediated by increased exposure to adverse life events, poorer parental health and reduced personal-social capital. These results add to the emerging literature on the potential importance of the association between disability and poverty in understanding the health and social inequalities faced by disabled people and their families.23,24,46 Failure to address the potential importance of poverty in this literature is likely to reinforce an overly pathological orientation in which disabled children are implicitly assumed to be a burden and a putative cause of maternal distress. The data in the present study appear to suggest that: (1) the majority of mothers of disabled children do not have mental health problems; and (2) that much of the difference in rates of distress may be attributed to socio-economic disadvantage and maternal health rather than to caring for a disabled child. Second, all residual risk was accounted for by the poorer social, emotional and behavioural development of the child. This is consistent with the existing literature suggesting that the association between child disability and maternal well-being is significantly mediated by increased rates of externalising emotional and behavioural problems among disabled children.22 The emerging literature in this area suggests that public health responses to improving the mental health of the mothers of disabled children will need to focus on three areas: poverty reduction; enhancing the resilience of mothers in the face of adversity; and improving the social, emotional and behavioural development of disabled children. The accumulation of evidence on the impact of poverty on health and well-being suggests that poverty reduction needs to be considered a core component of mental health policy.47 Policies that would reduce exposure to poverty among disabled children are likely to share much common ground with policies designed to alleviate child poverty in general. These would need to include both welfare-to-work initiatives, asset-building initiatives and the implementation of more progressive approaches to income redistribution (e.g. tax credits, increased rates of child benefits to offset costs). Key welfare-to-work initiatives that are likely to have a significant impact on families supporting a disabled child would include the universal provision of high-quality and disabilityfriendly child care, the introduction of more flexible employment practices, and the introduction of minimum wages that take the working poor out of poverty. It appears unlikely that welfareto-work policies of themselves will be sufficient to bring about sustained and significant reductions in child poverty.48 This may be particularly true for disabled children, who are significantly more likely to be supported by lone mothers and may face particular difficulties in accessing reliable child care. It is perhaps notable that the success of the Nordic countries in sustaining very low levels of child poverty has been based on the use of tax transfers involving universal (rather than means tested) benefits that are tied to average incomes.24 In addition to policies that seek to directly reduce poverty
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rates, parents of disabled children would also stand to benefit from the sustained and systematic introduction of policies that specifically target some of the pathways that are likely to mediate and/or moderate the link between poverty and mental health. These include exposure to adverse life events and aspects of human, personal and social capital that promote resilience in the face of adversity (e.g. problem-solving skills, positive personal achievements, family harmony, and a sense of connectedness to the local community). Finally, a comprehensive public health strategy will need to address the social, emotional and behavioural development of disabled children. In addition to the factors mentioned above (which may also be expected to have a positive impact on child mental health), widespread implementation of effective early intervention and child development programs49 and parenting training programs50 that offer the prospect of breaking the cycles of disadvantage that perpetuate the inter-generational transmission of poverty and shape health and well-being will be particularly important.

Unanswered questions and future research

The strength of the relationship between poverty, child disability and maternal distress we have reported suggests that the complex process of untangling the relationships between these factors is likely to be an area of considerable relevance to policy and practice. It appears likely that the relationships between these three variables will be bi-directional. Thus, for example, while there is considerable evidence that poverty influences child development, there is also evidence to suggest that the direct and indirect costs associated with caring for a disabled child may lead to increased risks of poverty.24 Similarly, while there is evidence that poverty influences maternal well-being, there is also evidence to suggest that poor mental health may have an adverse influence on socioeconomic position through increasing the risk of downward social mobility.51 Research in the general population suggests that, while bi-directionality exists, the most powerful effects run from socioeconomic position to health and well-being.44,45 The increasing availability of child cohort studies within which it is possible to identify disabled children opens up the possibility of determining whether such a pattern of relationships will also hold true for mothers and fathers caring for a disabled child.

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6. Weiss MJ. Hardiness and social support as predictors of stress in mothers of typical children, children with autism and children with mental retardation. Autism. 2002;6:115-30. 7. Shapiro J, Tittle K. Maternal Adaptation to Child Disability in a Hispanic Population. Family Relations. 1990;39:179-85. 8. Winjberg-Williams BJ, Kamps WA, Klip EC, Hoekstra-Weebers JEHM. Psychological adjustment of parents of pediatric cancer patients revisited five years later. Psychooncology. 2006;15:1-8. 9. Emerson E. Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the childs difficulties. J Intellect Disabil Res. 2003;47:385-99. 10. Hawley CA, Ward AB, Magnay AR, Long J. Parental stress and burden following traumatic brain injury amongst children and adolescents. Brain Inj. 2003;17:123. 11. McConnell D, Llewellyn G. Health of mothers of school-age children with disabilities. 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Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disability. J Intellect Disabil Res. 2006;50:862-73. 24. Emerson E, Graham H, Hatton C. The measurement of poverty and socioeconomic position in research involving people with intellectual disability. In: Glidden LM, editor. International Review of Research in Mental Retardation. New York (NY): Academic Press; 2006. p. 77-108. 25. Australian Institute of Family Studies. The Longitudinal Study of Australian Children: 2005-06 Annual Report. Melbourne (AUST): AIFS; 2006. 26. Australian Institute of Family Studies. The Longitudinal Study of Australian Children: Data Users Guide. Ver 2.1. Melbourne (AUST): AIFS; 2006. 27. Soloff C, Lawrence D, Johnstone R. LSAC Technical Paper No.: 1: Sample Design. Melbourne (AUST): Australian Institute of Family Studies; 2005. 28. Soloff C, Lawrence D, Misson S, Johnstone R. 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