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Parental wellbeing of Iranian families with children who have developmental disabilities
Research in Developmental Disabilities 35 (2014) 1639–1647
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Research in Developmental Disabilities
Parental wellbeing of Iranian families with children who have developmental disabilities Sayyed Ali Samadi a, Roy McConkey a,*, Brendan Bunting b a b
Institute of Nursing and Health Research, University of Ulster, Northern Ireland, UK Psychology Research Institute, University of Ulster, Northern Ireland, UK
A R T I C L E I N F O
A B S T R A C T
Article history: Received 29 November 2013 Received in revised form 26 March 2014 Accepted 1 April 2014 Available online 26 April 2014
To date, most research with families who have a child with developmental disabilities has been undertaken in English speaking countries. Poorer health, allied with increased levels of stress has been commonly reported for mothers but less is known about the impact on fathers and on overall family functioning. This study aimed to document the correlates of these parental impacts with Iranian mothers and fathers who had children with either intellectual disabilities (ID) or with autism spectrum disorders (ASD). In all 121 parents (69 mothers and 52 fathers from 94 families) who had a child with a diagnosis of ADS, along with 115 parents of children with ID (83 mothers and 32 fathers from 101 families) volunteered to take part in the study. Each participant completed through interview standardised rating scales of parenting stress, emotional well-being, family functioning and satisfaction with caring role along with demographic information and details of informal supports. Structural Equation Modeling identified that family functioning was much poorer in families whose child had ASD and both mothers and fathers reported higher levels of stress. Poorer emotional well-being contributed to higher stress and was more frequent among mothers, single parents and those whose children had behaviour problems. Having other dependents living at home and more sources of informal support improved the emotional wellbeing of parents but not their stress or family functioning. Parents who derived greater satisfaction from their caring role tended to have better emotional health and less stress. Although the impact on Iranian parents of having a child with developmental disabilities is broadly similar to those of parents in other cultures, there are indications that children with ASD present distinct challenges to these families. The model derived in this study is a useful guide both for further research as well as familycentred interventions. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Intellectual disability Autism spectrum disorder Iran Parents Health Stress Family functioning
1. Introduction Developmental disabilities occur in every culture and every country. It is mostly parents who care for the affected child. In recent years, a growing body of research has documented the adverse impact these children can have on their families, notably in terms of the stresses parents experience and their poorer emotional health. However this research has been undertaken mostly in English speaking, Western countries (Families Special Interest Research Group of IASSIDD, 2013). The purpose of this study was to investigate the well-being of mothers and fathers from another culture; in this instance Iran.
* Corresponding author. Tel.: +44 28 90 852537; fax: +44 28 90 36 82 02. E-mail address: [email protected] (R. McConkey). http://dx.doi.org/10.1016/j.ridd.2014.04.001 0891-4222/ß 2014 Elsevier Ltd. All rights reserved.
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Iranian society is distinct from other Islamic societies of the Middle-East and Central Eurasia in terms of its long history of civilization, its geographical location, separate language (Persian) and religious denomination (Shia Muslim). Information about the impact of children with developmental disabilities on Iranian parents would assist with the development of more family-centred support services within Iran that are only beginning to develop (Samadi, 2008). It would also offer some insights for supporting Iranian immigrants in Western countries (Welterlin & LaRue, 2007). In addition the study would further confirm if the impact of these disabilities on parental wellbeing is replicated across cultures. A meta-analysis of 18 studies identified a greatly increased risk of depression among mothers of children with developmental disabilities compared to those with typically developing children (Singer, 2006). Moreover the depression scores of mothers who had children with ASD were also significantly higher than those of mothers whose children had other developmental disabilities (Olsson & Hwang, 2001). The emotional well-being of fathers has received less consideration with no differences reported between parents of toddlers (Davis & Carter, 2008) whereas Jones, Totsika, Hastings, and Petalas (2013) reported that mothers of the same child were significantly more depressed than fathers. Parental stress also has been a focus of interest with past research consistently reporting significantly more stress among these parents (Pisula, 2011). Mothers have higher stress levels than fathers especially when the child has ASD, although the difference is not so marked with children who have other developmental disabilities such as Down Syndrome (Dabrowska & Pisula, 2010). A clear relationship has been reported between increased parental stress and the severity of behaviour problems exhibited by the child, such as conduct disorders (e.g., Hastings, 2002; Lecavalier, Leone, & Wiltz, 2006; Tomanik, Harris, & Hawkins, 2004). Only a small number of studies have explored the relationship between emotional well-being and parental stress. Not surprisingly, increased stress is associated with poorer emotional health with stress proliferation over time accentuating parental depression (Benson & Karlof, 2009). More broadly, Smith et al. (2010) suggested that stress is an important predictor of overall family functioning which McConkey, Truesdale-Kennedy, Chang, Jarrah, and Shukri (2008) confirmed in a crosscultural study with Irish, Jordanian and Taiwanese parents. A growing literature has identified moderating influences on these adverse impacts. Dempsey, Keen, Pennell, O’Reilly, and Neilands (2009) and Ingersoll and Hambrick (2011) highlighted the role that social support within families can play in moderating maternal stress. Conversely low levels of support have been shown to predict depression and anxiety in mothers (Boyd, 2002) and to result in higher ratings of a negative impact of the child on family life (Bishop, Richler, Cain, Lord, & Floyd, 2007). More recently attention has shifted to the exploring the gains perceived by mothers of parenting a child with developmental disabilities which can act as an explanatory coping strategy for them (Hasting & Taunt, 2002). There is evidence too that feelings of hope can act as a protective factor against psychological distress (Ogston, Mackintosh, & Myers, 2011). To date nearly all these research studies have been undertaken with predominantly middle-class, English-speaking, white parents who had access to a range of professional supports for their child (Singer, 2006). The applicability of the findings to parents in other societies around the world cannot be assumed (Ghosh & Magana, 2009). For example, societal influences may affect the way parents appraise the stressors they experience and their styles of coping (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). Indeed there is a growing appreciation of the need in Western countries to adjust family support services to the eco-culture of immigrant families (Welterlin & LaRue, 2007) especially if there is an increased likelihood of autism occurring immigrant among families as a recent review suggests (Fairthorne, Langridge, Bourke, & Leonard, 2013). Moreover this argument carries even greater weight when it comes to developing services in non-Western societies (Samadi & McConkey, 2011). These need to reflect the values and cultures of the society and families identified through indigenous research (Crabtree, 2007). Nonetheless, similar findings to those noted for Western countries have been reported in studies recently conducted in Japan (Mori, Ujiie, Smith, & Howlin, 2009), Malaysia (Norizan & Shamsuddin, 2010), Taiwan (Gau et al., 2012) and Turkey (Bilgin & Kucuk, 2010); notably high levels of emotional problems among mothers whose children had developmental disabilities such as ASD and Down Syndrome which was exacerbated by the child’s behaviours. Differences between mothers and fathers have been rarely studied internationally although with Taiwanese families mothers were more affected than fathers (Gau et al., 2012). However no differences were reported between Israeli parents in levels of child-related stress (Rimmerman, Turkel, & Crossman, 2003); a finding also confirmed with Lebanese parents of children with intellectual disabilities (Azar & Badr, 2010). In both these studies, less stress was associated with access to informal support; a relationship also endorsed with Arab mothers of children with intellectual disabilities living in Northern Israel (Duvdevany & Abboud, 2003) and mothers of children with autism living in the West Bank (Dababnah & Parish, 2013). Reports from Turkish mothers as to how they coped with stress arising from a child with ASD also confirms the contribution of social support (Bilgin & Kucuk, 2010). The present study focused on Iran: a culture that thus far has received little international attention. However it sought to integrate into one investigation the various pertinent parameters identified in previous research with families. Thus the main aims of the study were: 1. To describe the inter-relationships between emotional health, parenting stress and family functioning with Iranian parents. 2. To compare the impact on parental wellbeing of having a child with intellectual disability (ID) with children who have a diagnosis of autism spectrum disorder (ASD).
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3. To explore the differences that exist between the impact on mothers and on fathers. 4. To determine if positive perceptions of caring and access to informal supports improves the wellbeing of Iranian parents. This study could also provide the basis for further cross-cultural research in terms of identifying suitable measures and methodology. 2. Method 2.1. Ethical issues In Iran there are no formally constituted ethics committees. However international good practice was followed in that all participants were given a written description of the study which was also read to them. This described the information they would be asked to provide and told the reasons for undertaking the study. They were assured that all information was confidential and it was only available to the researchers. No one could be identified in any report either verbally or written. Parents had the right to withdraw from the study at any time but none did so. 2.2. Recruitment of parents The following inclusion criteria were used for the study. The parents currently lived with a child aged up to 20 years. Those of school age had an official diagnosis of either ID or ASD as ascertained by the Iranian Special Education Organisation (ISEO) using ICD-10 criteria. Experts within the ISEO have received training in the administration of standardised tests of intellectual functioning and in the use a translated version of ADI-R for children who screened positive for ASD. This training is modelled on that provided in UK and includes video observation of their assessments by accredited trainers. However in the Mother and Child Clinics, clinicians (usually paediatricians) had made the diagnosis for the 17 preschool children in the sample based mainly on clinical observations using largely ICD-10 criteria. Parents of children with ID were recruited through three government special schools in three different Provinces and from two private organisations based in Tehran that provided a range of services to children and families. The families who had a child with ASD were recruited from six special schools for ASD children and through three Mother and Child clinics in Tehran. In addition an advertisement about the study appeared in a local magazine with contact details for the first author from which 60 parents living in Tehran were recruited. Although we sought to recruit both the mother and father of the child this was not always possible. 2.3. The sample In all, 115 parents from 101 families who had a child with ID agreed to take part in the study; consisting of 13 couples; 70 mothers only and 19 fathers only. There were 121 parents who had a child with ASD from 94 families. This grouping consisted of 27 mother-father pairs, 42 mothers only and 25 fathers only. Tables 1 and 2 give details of the parents and of their children for each grouping as well as for the total sample of 236 parents. There were significant differences in parental characteristics across the two groupings which were in line with Table 1 Characteristics of parents in the two samples.
Mothers Fathers Both parents participated One parent participated Under 40 years 40 plus No educational qualifications School examinations Higher education Fars Non-Fars Single parent Both parents Own home Rented/live with family One parent is the primary carer Mother and father are primary carers Relatives in neighbourhood No relatives in the neighbourhood Other dependants living at home No other dependents living at home
ASD sample (N = 121)
ID Sample (N = 115)
Total (N = 236)
69 52 54 66 69 52 1 63 57 83 38 8 113 93 28 103 18 25 96 18 103
83 32 26 89 38 77 56 41 18 83 31 14 101 66 48 85 29 42 72 22 93
152 84 83 153 107 129 57 104 75 166 69 22 214 159 76 188 47 67 168 40 196
(57%) (43%) (45%) (55%) (57%) (43%) (1%) (52%) (47%) (69%) (31%) (7%) (93%) (77%) (23%) (85%) (15%) (21%) (79%) (15%) (85%)
(72%) (28%) (23%) (77%) (33%) (67%) (49%) (36%) (16%) (73%) (27%) (12%) (88%) (58%) (42%) (75%) (25%) (37%) (63%) (19%) (81%)
(64%) (36%) (35%) (65%) (45%) (55%) (24%) (44%) (32%) (71%) (29%) (9%) (91%) (68%) (32%) (80%) (20%) (29%) (71%) (17%) (83%)
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Table 2 Characteristics of children in the two samples.
Male Female Aged 4–10 years Aged 11+ years First born and only child Second or later born Child presents with behaviour problems Child has no behaviour problems Child has one or more additional impairments Child has no additional impairments Not in school Attends special unit in mainstream school Attends special school
ASD sample (N = 94)
ID Sample (N = 101)
Total (N = 195)
72 22 68 26 53 41 64 30 20 74 2 18 74
65 36 26 75 34 66 12 88 38 62 35 37 28
137 58 94 101 87 107 76 118 58 136 37 55 102
(77%) (23%) (72%) (28%) (56%) (44%) (68%) (32%) (21%) (79%) (2%) (19%) (79%)
(64%) (36%) (26%) (74%) (34%) (66%) (12%) (88%) (38%) (62%) (35%) (37%) (28%)
(70%) (30%) (48%) (52%) (45%) (55%) (39%) (61%) (30%) (70%) (19%) (28%) (53%)
international comparisons (Fairthorne et al., 2013) although recruitment biases could also be present. More fathers and more couples of children with ASD volunteered to take part. Also parents of children with ASD tended to be younger, to better educated and to own their own home. Also mothers of ASD children were more likely to be the primary carers whereas for children with ID both parents were named as the main carer. However the samples were comparable in terms of ethnicity and the presence of other dependents in the family home. Only limited comparisons could be made between the samples and national data on the Iranian population as reported by the Iranian Statistical Centre (http://amar.sci.org.ir/index_e.aspx). The most striking difference was in terms of university education with nearly half the parents of children with ASD (47%) in the sample having attended university compared to the national average of 13%. The proportion of non-Fars in the present sample (29%) was slightly higher than the national figure of 25% and fewer parents of children with ID (58%) lived in privately owned accommodation compared to 73% nationally. There were also significant differences in the children’s characteristics (see Table 2). Children with ASD were younger (mean age 8.3 years compared to 12.6 years for children with ID); they were more likely to be first born or only children; to exhibit problem behaviours but have fewer other impairments such as vision, hearing or mobility problems. They were also more likely to attend a special school. The statistical analyses that follow controlled for the variations among parents and children across the two samples which has not always been the case in past studies. 2.4. Measures Three scales used in international research with families were selected for the study. General Health Questionnaire (Goldberg & Williams, 1991). This 28-item questionnaire screens for psychiatric morbidity and has been translated into Persian with a reported Cronbach’s alpha for the Iranian population (calculated on a 751 member sample) of 0.85 (Homan, 1998). In the present study the calculated Cronbach’s alpha was 0.925. A higher score is indicative of poorer emotional wellbeing with a score of 7 and above seen as the threshold that warrants further investigation. Example items include: ‘‘been feeling run down and out of sorts’’; ‘‘lost much sleep over worry’’; ‘‘been taking longer over the things you do’’ and ‘‘felt that life isn’t worth living’’. The Short Form of the Parenting Stress Index (PSI-SF). The Parenting Stress Index (PSI) provides an indication of the overall level of parenting stress a parent is experiencing. In this study the 36-item short version of the full PSI was used which has a 0.94 correlation with the total Stress score of the full length PSI, an internal consistency coefficient alpha of 0.91, and a testretest reliability coefficient of 0.84 over a 6-month retest interval (Abidin, 1990). In the present study, Cronbach’s alpha across the 36 items was 0.917. Higher scores indicate greater stress levels. Example items include: ‘‘since having this child, I have been unable to do new and different things’’; ‘‘sometimes I feel my child doesn’t like me and doesn’t want to be close to me’’ and ‘‘my child gets upset easily over the smallest thing’’. Family functioning (Epstein, Baldwin, & Bishop, 1983). This scale is taken from the McMaster Family Assessment Device. It consists of 12 items: six of which describe unhealthy functioning and six healthy functioning (such as the way that family members deal with a problem inside the family). A Cronbach’s alpha of 0.92 is reported for the English version of this scale although in the present sample it was 0.868. Higher scores are indicative of poorer family functioning. Example items include: ‘‘planning family activities is difficult because we misunderstand each other’’; ‘‘we do not get along well together’’ and ‘‘we express our feelings to each other’’. Two further measures were devised for the study which past studies suggested could moderate the impact on parental health, stress and family functioning. Satisfaction with caring. Based on the review of literature (Hasting & Taunt, 2002), 14 items were identified that described the positive gains that parents can experience from caring for a children with developmental disabilities. Parents were asked to rate their agreements using a five point scale from strongly agree to strongly disagree. The Chronbach alpha for this sample was 0.894. Example items include: ‘‘I get a sense of accomplishment at having done my best for the child’’; ‘‘I make
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the most of each day: take life at a slower pace’’; ‘‘my personal strength and confidence has increased’’. Higher scores indicate greater levels of satisfaction in caring for their child. Number of informal supports. In common with past research, parents were asked to indicate if they received support from up to nine sources including adults and other children in the household, grandparents and other extended family; friends, neighbours and other families who have a similar child. A higher count indicates more sources of support available to the parent. With the exception of the General Health Questionnaire which had already been translated, the above measures were translated into Farsi and Kurdish by the first author with back translations undertaken by bilingual speakers experienced in disability to check on the accuracy of the translation and the relevance to Iranian society. Only a few adjustments were needed to items to make them more culturally appropriate. Finally, basic demographic information was gathered on the parents and children using a structured questionnaire. 2.5. Procedure When parents indicated an interest in taking part in the study, the first author arranged by telephone a convenient time to visit the family in their home although three parents preferred to meet in the child’s school or a hotel lobby. At this meeting, they were given the information sheet which was read to them. After consenting, the rating scales were given to the parents and if they requested, the questions were read to them along with the choice of answers. Participating couples were asked to complete the scales separately. Other family members were often present in the home but interaction was discouraged with the parents. At the end of the interview parents were free to comment and ask any further questions. An information sheet had been prepared to leave with families that gave details of services for children with developmental disabilities and details of websites where families could get further information. 2.6. Data analysis As the sample included mothers and fathers of the same child, the following precautions were taken in the data analyses reported below. Comparisons were first made to ascertain if the data obtained from couples was significantly different from that obtained by single respondents of each gender on the five criterion variables. There were no significant differences on scores on emotional wellbeing; parenting stress and family functioning (p > 0.05). Parents who participated as couples reported having less informal supports available to them (p < 0.01) and they tended to be more satisfied with their caring role (p < 0.05). In addition the inter-correlations among the criterion variables – with the exception of informal supports – were very similar for parents who took part as couples and single respondents (see Table 3). Likewise, the correlations between informal support and the other predictor variables tended not to be significant for couples whereas they were for single respondents. This is largely due to the lack of variation in scores on informal support for couples. As a further control when undertaking the multivariate analyses, a variable identifying couples and single respondents was included in the analyses. However this did not contribute significantly to the model that emerged. 3. Results Pearson product moment correlations were calculated across the total sample for the three criterion variables included in the study along with the two moderating variables of satisfaction with caring and informal support. As Table 3 shows, there were significant relationships among these measures with the exception of satisfaction with caring and informal supports which were unrelated. 3.1. Developing a model Initially correlational analyses were undertaken among the three criterion variables of emotional health, parental stress and family functioning with the various predictor variables shown in Tables 1 and 2. These findings, coupled with the insights from the international literature, were used to inform the development of the model that accounted for the
Table 3 Inter-correlations among the criterion variables (N = 234).
Emotional wellbeing Parental stress Family functioning Satisfaction with caring
Parental stress
Family functioning
Satisfaction with caring
0.517**
0.349** 0.474**
0.401** 0.436** 0.352**
** Correlation is significant at the 0.01 level (2-tailed).
Informal support 0.181** 0.222** 0.318** 0.014
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Fig. 1. A model of the relationships associated with Iranian parental emotional health, stress and family functioning. (Note: Solid lines indicate a significant relationship: dotted lines a predicted relationship that was not significant.)
inter-relationships impacting on parental well-being which was then tested using MPlus (vers 7) Structural Equation Modelling (Muthe´n & Muthe´n, 1998–2012). The model assumed that the three outcome measures had a reciprocal relationship, i.e. they could have an effect on each other. Moreover these measures would be affected by parental satisfaction with their caring role and also by the amount of informal support available to them. In addition past research, supported by correlational analyses of the data obtained in this study, had identified other potential predictor variables; notably the parent’s gender, the presence of behaviour problems in the child; the diagnosis of ID or ASD, the number of other dependents living at home and the extent to which both parents were involved in the care of the child. 3.2. Testing the model Fig. 1 shows all the variables that were included within the original model, even where they were not statistically significant at the 0.05 level (two-tailed). This has been done because in our original reasoning we expected these to be important, and they may well turn out to be in other research, but this was not the case in the current study. The hypothesised model provided an adequate and robust description for the data (chi-square = 8.363, df = 8, p-value = 0.3988; CFI = 0.999; TLI = 0.996; RMSEA = 0.014, 90 Percent CI: 0.000–0.079). In all, 33% of the variance in the key outcome measure – Poor Family Functioning – was explained within the model. Increased parental stress alone had an explained variance of 23%, while Poorer Emotional Health had an explained variance of 13%. For each significant relationship identified in the model the unit increase on that measure compared to the contrast group is shown in Fig. 1 along with the standard error of the mean. 3.2.1. Parental emotional health As the figure shows, mothers had on average, poorer emotional health as indicated by much higher scores on the General Health Questionnaire (GHQ) than did fathers (Mothers mean 13.45: sd 8.12; Fathers mean 8.62: sd 5.98). In this model, mothers scored nearly 6 points higher than did fathers. Likewise, one parent families had on average a poorer emotional health score (mean = 15.05, sd = 7.05) compared to two parent families’ mean score (11.39 sd = 7.78). When a child had a behavioural problem, this was related to poorer emotional health in parents by some 4.5 units of change on the GHQ scores (se = 1.192). The respective sample means and standard deviations for the two groupings were as follows: (no behaviour problems mean = 9.65: sd = 7.69; behaviour problem present mean = 14.52, sd = 7.01). Conversely, three variables resulted in better emotional health. When other dependents were present in the household, scores on the GHQ tended to be better by around three units (est = 2.827, se = 1.428). The corresponding means and standard deviation were mean = 8.93: sd = 7.15 for those living with a dependent and mean = 12.31, sd = 7.79 amongst those who did not live with dependents.
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Likewise for every unit increase in level of informal support, the GHQ scores improved by over one unit (est = 1.389, se = 0.450). Also for every one unit increase in the level of dissatisfaction with the caring role, parental scores on the GHQ increased by 0.358 of a unit (se = 0.075). The relationships between GHQ scores and with other variables in the model were not statistically significant (p < 0.05 level). 3.2.2. Parental stress Parental stress was modelled in a similar manner to general health. Greater parental stress was experienced by those parents (both mothers and fathers) who had a child with ASD: they scored on average some 12 points higher on the Parenting Stress Index than did parents whose child had ID (est = 12.36: se = 3.37). This substantial difference is also shown in the means (ID mean = 102.52, sd = 21.82; ASD mean = 117.61, sd = 17.44). Parental satisfaction with their caring role had a similar but additional impact on Parental Stress (est = 0.353, se = 0.178) similar to that on their GHQ scores, i.e., the less satisfied one was with a caring role, the more stress it entailed. However the poorer emotional health of parents contributed to increased levels of parental stress by some two points on average (est 1.868: se = 0.375) although the converse – stress affecting emotional well-being – was not significant. Once the health scores were entered into the model, the relationship between single parenting and stress was no longer significant. This was also the case with the other variables associated with poorer emotional health such as parental gender, children’s behaviour problems, other dependants in the household and amount of informal support. This suggests that these variables have a direct effect on the emotional well-being of parents and only indirectly on parenting stress. 3.2.3. Family functioning Families where a child with ASD was present had over a four point deficit in their family functioning scores compared to those whose child had ID (est = 4.434, se = 0.830). The mean scores were as follows: ID mean 14.50: sd = 5.91; ASD mean = 21.24: sd = 5.46. This effect was in addition to the impact ASD had on parental stress which itself was related with poorer levels of family functioning (est = 0.153, se = 0.028). However, there was also a somewhat weaker reciprocal relationship from higher levels of family functioning to lower levels of parental stress (est = 0.907, se = 0.377). Finally, within the model other potential predictors such as age, parental education, home ownership, ethnic background (Fars and non-Fars) and couples did not significantly contribute to the model (p < 0.05). 4. Discussion This study has a number of strengths. It adds another culture to the international literature on parenting a child with developmental disabilities; it contrasted the experiences of parents whose children had a diagnosis of ASD with those who had a diagnosis of ID and fathers as well as mothers were informants. Moreover it controlled for potential confounding variables in the statistical analyses. That said there are two main limitations. Firstly, the self-selected sample may be biased to better informed and educated parents and therefore may not be typical of Iranian families especially those living in rural areas with limited or no contact with support services. Nonetheless the samples recruited were sufficiently large to ensure statistical power had been attained and included families from diverse backgrounds, characteristics and ethnicity. A second limitation is that the data came from a cross-sectional study thus the inferences drawn regarding the causal relationships need to be tested further in longitudinal research, although this aspiration has been hard to realise even in more affluent countries (Special Interest Research Group of IASSIDD, 2013). The resulting model confirmed the impact that having a child with developmental disabilities has on the functioning of Iranian families – particularly children with ASD – but parental stress and the emotional wellbeing of the parents also contributed. In terms of the latter, mothers rather than fathers were chiefly affected but also one parent families were more at risk than two parent households. Moreover it was the behaviour problems shown by the child rather than the type of developmental disability that affected mothers’ wellbeing although recent longitudinal research undertaken in the United Kingdom suggests that poorer maternal health may contribute to children’s behaviour difficulties more so than the converse (Totsika, Hastings, Emerson, Lancaster, & Berridge, 2013). More positively the study identified three factors that appear to boost the emotional wellbeing of parents. These were: having other dependents in the household, more sources of informal support and parents taking satisfaction from their caring role. Although the contribution of these variables was slight, albeit statistically significant, they do provide possible explanations as to why certain parents in all cultures cope better than others. Similar findings have emerged from previous studies in other countries (e.g. Ingersoll & Hambrick, 2011), although the presence of other dependents in the household, such as ageing parents, may be more salient in Iranian cultures with their emphasis on extended families providing mutual support (Samadi & McConkey, 2011). The relationship between emotional health and parenting stress was not especially strong once other variables were taken into account by the model which may explain the divergence from previous studies reviewed earlier. Rather the dominant influence on parental stress was the nature of the child’s disability. Children with ASD had a much greater impact on parent–child stress compared to children with intellectual disabilities. Moreover this held for both mothers and fathers and notably the impact of ASD was independent of the behaviour problems exhibited by the child which as previously noted, affected parents’ emotional wellbeing rather than stress (Totsika et al., 2013). This differential impact of ASD compared to ID
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on parental stress has not been previously reported which may suggest that this finding could be particular to Iranian culture and the expectations it places on children who have no obvious impairments. But then again past research internationally has not sufficiently investigated the differential impact that developmental disabilities may have on different indicators of parental well-being. Of particular interest would be the impact on Iranian parents of children having co-morbidity of ASD with ID which may have been present to some extent in these samples but was not formally recognised in the diagnoses given to families. This would serve to replicate the finding from a UK study which suggest that ASD either alone or with ID that is linked with poorer emotional wellbeing of mothers (Totsika, Hastings, Emerson, Lancaster, & Berridge, 2011). Three further factors contributed to parental stress. First, it was increased by poorer emotional health of parents although interestingly in this model, the converse was not statistically significant. As noted above, this relationship is a wellestablished finding internationally although further studies could usefully explore the direction of influence. For example if parents’ emotional wellbeing improves does this reduce feelings of stress? Indications from intervention studies with Iranian families suggests that this may be so (McConkey & Samadi, 2013). Second, parents’ satisfaction with their caring role also influenced their feelings of stress which was in addition to the impact it had on parents’ emotional wellbeing. To date the international literature has tended to emphasise the burden and strain that children with developmental disabilities can place on families with relatively little attention paid to their positive experiences. In the study the measure used was derived from research undertaken in affluent western cultures which may not adequately reflect the experiences of parents in other cultures (Dyches et al., 2004). Future research could usefully explore the development of a culturally sensitive tool that captures better the personal gains accruing to both mothers and father in their caring role. Third, parenting stress had a reciprocal relationship with ratings of family functioning; with the latter contributing to parental stress albeit the stronger relationship was with stress and poorer family functioning. Again this replicates the findings from previous studies in other cultures. The findings are suggestive also of the factors that might ameliorate parental stress such as improved family functioning and parents deriving greater satisfaction from their caring role. Increased social support would seem to have less direct impact on parental stress but rather indirectly through improved parental well-being. However by far the biggest reduction on parental stress is likely to come from parents and families understanding and managing better their child’s ASD. Compared to families whose children have ID, these families may need additional and ongoing support to manage the relationships among parents and siblings (Gau et al., 2012; McConkey & Samadi, 2013). 5. Conclusions The model derived in this study of the impact on Iranian parents of having a child with a developmental disability is not only of theoretical interest. It can guide practitioners in the provision of support for family carers in Iran as well as internationally. While the model proved to be robust statistically, it should be noted that on all three predictor measures of emotional wellbeing, stress and family functioning, there were high levels of unexplained variance. Thus supports will need to be tailored to the individual needs of families and not based on generalised assumptions. Also the study has demonstrated the value of extending to other societies the research methodologies that have evolved in more developed countries and of testing the robustness of generally accepted relationships in other cultures. Crosscultural comparisons could be further enhanced by identifying and applying the same measures with comparable samples drawn from contrasting countries and cultures. The measures used in this study show promise in this regard. Conflict of interest The authors had no conflict of interest in undertaking this research. References Abidin, R. (1990). The parental stress index: Short form. Charlottesville, VA: Pediatric Psychology Press. Azar, M., & Badr, L. K. (2010). Predictors of coping in parents of children with an intellectual disability: Comparison between Lebanese mothers and fathers. Journal of Pediatric Nursing, 25, 46–56. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39, 350–362. Bilgin, H., & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92–99. Bishop, S. L., Richler, J., Cain, A. C., Lord, C., & Floyd, F. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112, 450–461. Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with Autism. Focus on Autism and other Developmental Disabilities, 1, 208–215. Crabtree, S. A. (2007). Family responses to the social inclusion of children with developmental disabilities in the United Arab Emirates. Disability & Society, 22, 49– 62. Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54, 266–280. Dababnah, S., & Parish, S. L. (2013). ‘‘At a moment, you could collapse’’: Raising children with autism in the West Bank. Children and Youth Services Review, 35, 1670–1678. Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 278–291.
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Dempsey, I., Keen, D., Pennell, D., O’Reilly, J., & Neilands, J. (2009). Parent stress, parenting competence and family-centered support to young children with an intellectual or developmental disability. Research in Developmental Disabilities, 30, 558–566. Duvdevany, I., & Abboud, S. (2003). Stress, social support and wellbeing of Arab mothers of children with intellectual disability served by welfare services in northern Israel. Journal of Intellectual Disability Research, 47, 264–272. Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34, 211–222. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy, 9, 171–180. Fairthorne, J., Langridge, A., Bourke, J., & Leonard, H. (2013). Pre-existing differences in mothers of children with Autism Spectrum Disorder and/or Intellectual Disability: A review Open access at: http://dx.doi.org/10.5772/54488. Gau, S.S.-F., Chou, M.-C., Chiang, H.-L., Lee, J.-C., Wong, C.-C., Chou, W.-J., et al. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6, 263–270. Ghosh, S., & Magana, S. (2009). A rich mosaic: Emerging research on Asian families of persons with intellectual and developmental disabilities. International Review of Research in Mental Retardation, 37, 179–212. Goldberg, D., & Williams, P. (1991). A user’s guide to the General Health Questionnaire. Windsor: NFER-Nelson. Hastings, R. P. (2002). Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual and Developmental Disability, 27, 149–160. Hasting, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal of Mental Retardation, 107, 116– 127. Homan, A. (1998). Normalizing General Health Questionnaire on the Iranian population. Tehran: Tehran University Press (in Persian). Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 337–344. Jones, L., Totsika, V., Hastings, R. P., & Petalas, M. A. (2013). Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach. Journal of Autism and Developmental Disorders, 43, 2090–2098. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autistic spectrum disorders. Journal of Intellectual Disability Research, 50, 172–183. McConkey, R., & Samadi, S. A. (2013). The impact of mutual support on Iranian parents of children with an Autism Spectrum Disorder: A longitudinal study. Disability and Rehabilitation, 35, 775–784. McConkey, R., Truesdale-Kennedy, M., Chang, M. Y., Jarrah, S., & Shukri, R. (2008). The impact on mothers of bringing up a child with intellectual disabilities: A cross cultural study. International Journal of Nursing Studies, 45, 65–74. Mori, K., Ujiie, T., Smith, A., & Howlin, P. (2009). Parental stress associated with caring for children with Asperger’s syndrome or autism. Pediatrics International, 51, 364–370. Muthe´n, L. K., & Muthe´n, B. O. (1998–2012). Mplus user’s guide (7th ed.). LosAngeles, CA: Muthe´n & Muthe´n. Norizan, A., & Shamsuddin, K. (2010). Predictors of parenting stress among Malaysian mothers of children with Down syndrome. Journal of Intellectual Disability Research, 54, 992–1003. Ogston, P. L., Mackintosh, V. H., & Myers, B. J. (2011). Hope and worry in mothers of children with an autism spectrum disorder or Down syndrome. Research in Autism Spectrum Disorders, 5, 1378–1384. Olsson, M. B., & Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45, 535– 543. Pisula, E. (2011). Parenting stress in mothers and fathers of children with autism spectrum disorders. In M.-R. Mohammadi (Ed.), A comprehensive book on Autism Spectrum Disorders. Croatia: InTech Open Access. Rimmerman, A., Turkel, L., & Crossman, R. (2003). Perception of child development, child-related stress and dyadic adjustment: Pair analysis of married couples of young children with developmental disabilities. Journal of Intellectual and Developmental Disability, 28, 188–195. Samadi, S. A. (2008). Comparative policy brief: Status of intellectual disabilities in the Islamic Republic of Iran. Journal of Policy and Practice in Intellectual Disabilities, 5, 129–132. Samadi, S., & McConkey, R. (2011). Autism in developing countries: Lessons from Iran. Autism Research and Treatment, 2011. http://dx.doi.org/10.1155/2011/ 145359 Article ID 145359 Singer, G. H. S. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111, 155–169. Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 167–178. Special Interest Research Group of IASSIDD. (2013). Families supporting a child with intellectual or developmental disabilities: The current state of knowledge of families. Journal of Applied Research in Intellectual Disabilities. http://dx.doi.org/10.1111/jar.12078 Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviours exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability, 29, 16–26. Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011). A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism spectrum disorder and intellectual disability. Journal of Child Psychology and Psychiatry, 52, 91–99. Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2013). Is there a bidirectional relationship between maternal well-being and child behavior problems in autism spectrum disorders? Longitudinal analysis of a population-defined sample of young children. Autism Research, 6, 201–211. Welterlin, A., & LaRue, R. H. (2007). Serving the needs of immigrant families of children with autism. Disability and Society, 22, 747–760.
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Parental wellbeing of Iranian families with children who have developmental disabilities Sayyed Ali Samadi a, Roy McConkey a,*, Brendan Bunting b a b
Institute of Nursing and Health Research, University of Ulster, Northern Ireland, UK Psychology Research Institute, University of Ulster, Northern Ireland, UK
A R T I C L E I N F O
A B S T R A C T
Article history: Received 29 November 2013 Received in revised form 26 March 2014 Accepted 1 April 2014 Available online 26 April 2014
To date, most research with families who have a child with developmental disabilities has been undertaken in English speaking countries. Poorer health, allied with increased levels of stress has been commonly reported for mothers but less is known about the impact on fathers and on overall family functioning. This study aimed to document the correlates of these parental impacts with Iranian mothers and fathers who had children with either intellectual disabilities (ID) or with autism spectrum disorders (ASD). In all 121 parents (69 mothers and 52 fathers from 94 families) who had a child with a diagnosis of ADS, along with 115 parents of children with ID (83 mothers and 32 fathers from 101 families) volunteered to take part in the study. Each participant completed through interview standardised rating scales of parenting stress, emotional well-being, family functioning and satisfaction with caring role along with demographic information and details of informal supports. Structural Equation Modeling identified that family functioning was much poorer in families whose child had ASD and both mothers and fathers reported higher levels of stress. Poorer emotional well-being contributed to higher stress and was more frequent among mothers, single parents and those whose children had behaviour problems. Having other dependents living at home and more sources of informal support improved the emotional wellbeing of parents but not their stress or family functioning. Parents who derived greater satisfaction from their caring role tended to have better emotional health and less stress. Although the impact on Iranian parents of having a child with developmental disabilities is broadly similar to those of parents in other cultures, there are indications that children with ASD present distinct challenges to these families. The model derived in this study is a useful guide both for further research as well as familycentred interventions. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Intellectual disability Autism spectrum disorder Iran Parents Health Stress Family functioning
1. Introduction Developmental disabilities occur in every culture and every country. It is mostly parents who care for the affected child. In recent years, a growing body of research has documented the adverse impact these children can have on their families, notably in terms of the stresses parents experience and their poorer emotional health. However this research has been undertaken mostly in English speaking, Western countries (Families Special Interest Research Group of IASSIDD, 2013). The purpose of this study was to investigate the well-being of mothers and fathers from another culture; in this instance Iran.
* Corresponding author. Tel.: +44 28 90 852537; fax: +44 28 90 36 82 02. E-mail address: [email protected] (R. McConkey). http://dx.doi.org/10.1016/j.ridd.2014.04.001 0891-4222/ß 2014 Elsevier Ltd. All rights reserved.
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Iranian society is distinct from other Islamic societies of the Middle-East and Central Eurasia in terms of its long history of civilization, its geographical location, separate language (Persian) and religious denomination (Shia Muslim). Information about the impact of children with developmental disabilities on Iranian parents would assist with the development of more family-centred support services within Iran that are only beginning to develop (Samadi, 2008). It would also offer some insights for supporting Iranian immigrants in Western countries (Welterlin & LaRue, 2007). In addition the study would further confirm if the impact of these disabilities on parental wellbeing is replicated across cultures. A meta-analysis of 18 studies identified a greatly increased risk of depression among mothers of children with developmental disabilities compared to those with typically developing children (Singer, 2006). Moreover the depression scores of mothers who had children with ASD were also significantly higher than those of mothers whose children had other developmental disabilities (Olsson & Hwang, 2001). The emotional well-being of fathers has received less consideration with no differences reported between parents of toddlers (Davis & Carter, 2008) whereas Jones, Totsika, Hastings, and Petalas (2013) reported that mothers of the same child were significantly more depressed than fathers. Parental stress also has been a focus of interest with past research consistently reporting significantly more stress among these parents (Pisula, 2011). Mothers have higher stress levels than fathers especially when the child has ASD, although the difference is not so marked with children who have other developmental disabilities such as Down Syndrome (Dabrowska & Pisula, 2010). A clear relationship has been reported between increased parental stress and the severity of behaviour problems exhibited by the child, such as conduct disorders (e.g., Hastings, 2002; Lecavalier, Leone, & Wiltz, 2006; Tomanik, Harris, & Hawkins, 2004). Only a small number of studies have explored the relationship between emotional well-being and parental stress. Not surprisingly, increased stress is associated with poorer emotional health with stress proliferation over time accentuating parental depression (Benson & Karlof, 2009). More broadly, Smith et al. (2010) suggested that stress is an important predictor of overall family functioning which McConkey, Truesdale-Kennedy, Chang, Jarrah, and Shukri (2008) confirmed in a crosscultural study with Irish, Jordanian and Taiwanese parents. A growing literature has identified moderating influences on these adverse impacts. Dempsey, Keen, Pennell, O’Reilly, and Neilands (2009) and Ingersoll and Hambrick (2011) highlighted the role that social support within families can play in moderating maternal stress. Conversely low levels of support have been shown to predict depression and anxiety in mothers (Boyd, 2002) and to result in higher ratings of a negative impact of the child on family life (Bishop, Richler, Cain, Lord, & Floyd, 2007). More recently attention has shifted to the exploring the gains perceived by mothers of parenting a child with developmental disabilities which can act as an explanatory coping strategy for them (Hasting & Taunt, 2002). There is evidence too that feelings of hope can act as a protective factor against psychological distress (Ogston, Mackintosh, & Myers, 2011). To date nearly all these research studies have been undertaken with predominantly middle-class, English-speaking, white parents who had access to a range of professional supports for their child (Singer, 2006). The applicability of the findings to parents in other societies around the world cannot be assumed (Ghosh & Magana, 2009). For example, societal influences may affect the way parents appraise the stressors they experience and their styles of coping (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). Indeed there is a growing appreciation of the need in Western countries to adjust family support services to the eco-culture of immigrant families (Welterlin & LaRue, 2007) especially if there is an increased likelihood of autism occurring immigrant among families as a recent review suggests (Fairthorne, Langridge, Bourke, & Leonard, 2013). Moreover this argument carries even greater weight when it comes to developing services in non-Western societies (Samadi & McConkey, 2011). These need to reflect the values and cultures of the society and families identified through indigenous research (Crabtree, 2007). Nonetheless, similar findings to those noted for Western countries have been reported in studies recently conducted in Japan (Mori, Ujiie, Smith, & Howlin, 2009), Malaysia (Norizan & Shamsuddin, 2010), Taiwan (Gau et al., 2012) and Turkey (Bilgin & Kucuk, 2010); notably high levels of emotional problems among mothers whose children had developmental disabilities such as ASD and Down Syndrome which was exacerbated by the child’s behaviours. Differences between mothers and fathers have been rarely studied internationally although with Taiwanese families mothers were more affected than fathers (Gau et al., 2012). However no differences were reported between Israeli parents in levels of child-related stress (Rimmerman, Turkel, & Crossman, 2003); a finding also confirmed with Lebanese parents of children with intellectual disabilities (Azar & Badr, 2010). In both these studies, less stress was associated with access to informal support; a relationship also endorsed with Arab mothers of children with intellectual disabilities living in Northern Israel (Duvdevany & Abboud, 2003) and mothers of children with autism living in the West Bank (Dababnah & Parish, 2013). Reports from Turkish mothers as to how they coped with stress arising from a child with ASD also confirms the contribution of social support (Bilgin & Kucuk, 2010). The present study focused on Iran: a culture that thus far has received little international attention. However it sought to integrate into one investigation the various pertinent parameters identified in previous research with families. Thus the main aims of the study were: 1. To describe the inter-relationships between emotional health, parenting stress and family functioning with Iranian parents. 2. To compare the impact on parental wellbeing of having a child with intellectual disability (ID) with children who have a diagnosis of autism spectrum disorder (ASD).
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3. To explore the differences that exist between the impact on mothers and on fathers. 4. To determine if positive perceptions of caring and access to informal supports improves the wellbeing of Iranian parents. This study could also provide the basis for further cross-cultural research in terms of identifying suitable measures and methodology. 2. Method 2.1. Ethical issues In Iran there are no formally constituted ethics committees. However international good practice was followed in that all participants were given a written description of the study which was also read to them. This described the information they would be asked to provide and told the reasons for undertaking the study. They were assured that all information was confidential and it was only available to the researchers. No one could be identified in any report either verbally or written. Parents had the right to withdraw from the study at any time but none did so. 2.2. Recruitment of parents The following inclusion criteria were used for the study. The parents currently lived with a child aged up to 20 years. Those of school age had an official diagnosis of either ID or ASD as ascertained by the Iranian Special Education Organisation (ISEO) using ICD-10 criteria. Experts within the ISEO have received training in the administration of standardised tests of intellectual functioning and in the use a translated version of ADI-R for children who screened positive for ASD. This training is modelled on that provided in UK and includes video observation of their assessments by accredited trainers. However in the Mother and Child Clinics, clinicians (usually paediatricians) had made the diagnosis for the 17 preschool children in the sample based mainly on clinical observations using largely ICD-10 criteria. Parents of children with ID were recruited through three government special schools in three different Provinces and from two private organisations based in Tehran that provided a range of services to children and families. The families who had a child with ASD were recruited from six special schools for ASD children and through three Mother and Child clinics in Tehran. In addition an advertisement about the study appeared in a local magazine with contact details for the first author from which 60 parents living in Tehran were recruited. Although we sought to recruit both the mother and father of the child this was not always possible. 2.3. The sample In all, 115 parents from 101 families who had a child with ID agreed to take part in the study; consisting of 13 couples; 70 mothers only and 19 fathers only. There were 121 parents who had a child with ASD from 94 families. This grouping consisted of 27 mother-father pairs, 42 mothers only and 25 fathers only. Tables 1 and 2 give details of the parents and of their children for each grouping as well as for the total sample of 236 parents. There were significant differences in parental characteristics across the two groupings which were in line with Table 1 Characteristics of parents in the two samples.
Mothers Fathers Both parents participated One parent participated Under 40 years 40 plus No educational qualifications School examinations Higher education Fars Non-Fars Single parent Both parents Own home Rented/live with family One parent is the primary carer Mother and father are primary carers Relatives in neighbourhood No relatives in the neighbourhood Other dependants living at home No other dependents living at home
ASD sample (N = 121)
ID Sample (N = 115)
Total (N = 236)
69 52 54 66 69 52 1 63 57 83 38 8 113 93 28 103 18 25 96 18 103
83 32 26 89 38 77 56 41 18 83 31 14 101 66 48 85 29 42 72 22 93
152 84 83 153 107 129 57 104 75 166 69 22 214 159 76 188 47 67 168 40 196
(57%) (43%) (45%) (55%) (57%) (43%) (1%) (52%) (47%) (69%) (31%) (7%) (93%) (77%) (23%) (85%) (15%) (21%) (79%) (15%) (85%)
(72%) (28%) (23%) (77%) (33%) (67%) (49%) (36%) (16%) (73%) (27%) (12%) (88%) (58%) (42%) (75%) (25%) (37%) (63%) (19%) (81%)
(64%) (36%) (35%) (65%) (45%) (55%) (24%) (44%) (32%) (71%) (29%) (9%) (91%) (68%) (32%) (80%) (20%) (29%) (71%) (17%) (83%)
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Table 2 Characteristics of children in the two samples.
Male Female Aged 4–10 years Aged 11+ years First born and only child Second or later born Child presents with behaviour problems Child has no behaviour problems Child has one or more additional impairments Child has no additional impairments Not in school Attends special unit in mainstream school Attends special school
ASD sample (N = 94)
ID Sample (N = 101)
Total (N = 195)
72 22 68 26 53 41 64 30 20 74 2 18 74
65 36 26 75 34 66 12 88 38 62 35 37 28
137 58 94 101 87 107 76 118 58 136 37 55 102
(77%) (23%) (72%) (28%) (56%) (44%) (68%) (32%) (21%) (79%) (2%) (19%) (79%)
(64%) (36%) (26%) (74%) (34%) (66%) (12%) (88%) (38%) (62%) (35%) (37%) (28%)
(70%) (30%) (48%) (52%) (45%) (55%) (39%) (61%) (30%) (70%) (19%) (28%) (53%)
international comparisons (Fairthorne et al., 2013) although recruitment biases could also be present. More fathers and more couples of children with ASD volunteered to take part. Also parents of children with ASD tended to be younger, to better educated and to own their own home. Also mothers of ASD children were more likely to be the primary carers whereas for children with ID both parents were named as the main carer. However the samples were comparable in terms of ethnicity and the presence of other dependents in the family home. Only limited comparisons could be made between the samples and national data on the Iranian population as reported by the Iranian Statistical Centre (http://amar.sci.org.ir/index_e.aspx). The most striking difference was in terms of university education with nearly half the parents of children with ASD (47%) in the sample having attended university compared to the national average of 13%. The proportion of non-Fars in the present sample (29%) was slightly higher than the national figure of 25% and fewer parents of children with ID (58%) lived in privately owned accommodation compared to 73% nationally. There were also significant differences in the children’s characteristics (see Table 2). Children with ASD were younger (mean age 8.3 years compared to 12.6 years for children with ID); they were more likely to be first born or only children; to exhibit problem behaviours but have fewer other impairments such as vision, hearing or mobility problems. They were also more likely to attend a special school. The statistical analyses that follow controlled for the variations among parents and children across the two samples which has not always been the case in past studies. 2.4. Measures Three scales used in international research with families were selected for the study. General Health Questionnaire (Goldberg & Williams, 1991). This 28-item questionnaire screens for psychiatric morbidity and has been translated into Persian with a reported Cronbach’s alpha for the Iranian population (calculated on a 751 member sample) of 0.85 (Homan, 1998). In the present study the calculated Cronbach’s alpha was 0.925. A higher score is indicative of poorer emotional wellbeing with a score of 7 and above seen as the threshold that warrants further investigation. Example items include: ‘‘been feeling run down and out of sorts’’; ‘‘lost much sleep over worry’’; ‘‘been taking longer over the things you do’’ and ‘‘felt that life isn’t worth living’’. The Short Form of the Parenting Stress Index (PSI-SF). The Parenting Stress Index (PSI) provides an indication of the overall level of parenting stress a parent is experiencing. In this study the 36-item short version of the full PSI was used which has a 0.94 correlation with the total Stress score of the full length PSI, an internal consistency coefficient alpha of 0.91, and a testretest reliability coefficient of 0.84 over a 6-month retest interval (Abidin, 1990). In the present study, Cronbach’s alpha across the 36 items was 0.917. Higher scores indicate greater stress levels. Example items include: ‘‘since having this child, I have been unable to do new and different things’’; ‘‘sometimes I feel my child doesn’t like me and doesn’t want to be close to me’’ and ‘‘my child gets upset easily over the smallest thing’’. Family functioning (Epstein, Baldwin, & Bishop, 1983). This scale is taken from the McMaster Family Assessment Device. It consists of 12 items: six of which describe unhealthy functioning and six healthy functioning (such as the way that family members deal with a problem inside the family). A Cronbach’s alpha of 0.92 is reported for the English version of this scale although in the present sample it was 0.868. Higher scores are indicative of poorer family functioning. Example items include: ‘‘planning family activities is difficult because we misunderstand each other’’; ‘‘we do not get along well together’’ and ‘‘we express our feelings to each other’’. Two further measures were devised for the study which past studies suggested could moderate the impact on parental health, stress and family functioning. Satisfaction with caring. Based on the review of literature (Hasting & Taunt, 2002), 14 items were identified that described the positive gains that parents can experience from caring for a children with developmental disabilities. Parents were asked to rate their agreements using a five point scale from strongly agree to strongly disagree. The Chronbach alpha for this sample was 0.894. Example items include: ‘‘I get a sense of accomplishment at having done my best for the child’’; ‘‘I make
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the most of each day: take life at a slower pace’’; ‘‘my personal strength and confidence has increased’’. Higher scores indicate greater levels of satisfaction in caring for their child. Number of informal supports. In common with past research, parents were asked to indicate if they received support from up to nine sources including adults and other children in the household, grandparents and other extended family; friends, neighbours and other families who have a similar child. A higher count indicates more sources of support available to the parent. With the exception of the General Health Questionnaire which had already been translated, the above measures were translated into Farsi and Kurdish by the first author with back translations undertaken by bilingual speakers experienced in disability to check on the accuracy of the translation and the relevance to Iranian society. Only a few adjustments were needed to items to make them more culturally appropriate. Finally, basic demographic information was gathered on the parents and children using a structured questionnaire. 2.5. Procedure When parents indicated an interest in taking part in the study, the first author arranged by telephone a convenient time to visit the family in their home although three parents preferred to meet in the child’s school or a hotel lobby. At this meeting, they were given the information sheet which was read to them. After consenting, the rating scales were given to the parents and if they requested, the questions were read to them along with the choice of answers. Participating couples were asked to complete the scales separately. Other family members were often present in the home but interaction was discouraged with the parents. At the end of the interview parents were free to comment and ask any further questions. An information sheet had been prepared to leave with families that gave details of services for children with developmental disabilities and details of websites where families could get further information. 2.6. Data analysis As the sample included mothers and fathers of the same child, the following precautions were taken in the data analyses reported below. Comparisons were first made to ascertain if the data obtained from couples was significantly different from that obtained by single respondents of each gender on the five criterion variables. There were no significant differences on scores on emotional wellbeing; parenting stress and family functioning (p > 0.05). Parents who participated as couples reported having less informal supports available to them (p < 0.01) and they tended to be more satisfied with their caring role (p < 0.05). In addition the inter-correlations among the criterion variables – with the exception of informal supports – were very similar for parents who took part as couples and single respondents (see Table 3). Likewise, the correlations between informal support and the other predictor variables tended not to be significant for couples whereas they were for single respondents. This is largely due to the lack of variation in scores on informal support for couples. As a further control when undertaking the multivariate analyses, a variable identifying couples and single respondents was included in the analyses. However this did not contribute significantly to the model that emerged. 3. Results Pearson product moment correlations were calculated across the total sample for the three criterion variables included in the study along with the two moderating variables of satisfaction with caring and informal support. As Table 3 shows, there were significant relationships among these measures with the exception of satisfaction with caring and informal supports which were unrelated. 3.1. Developing a model Initially correlational analyses were undertaken among the three criterion variables of emotional health, parental stress and family functioning with the various predictor variables shown in Tables 1 and 2. These findings, coupled with the insights from the international literature, were used to inform the development of the model that accounted for the
Table 3 Inter-correlations among the criterion variables (N = 234).
Emotional wellbeing Parental stress Family functioning Satisfaction with caring
Parental stress
Family functioning
Satisfaction with caring
0.517**
0.349** 0.474**
0.401** 0.436** 0.352**
** Correlation is significant at the 0.01 level (2-tailed).
Informal support 0.181** 0.222** 0.318** 0.014
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Fig. 1. A model of the relationships associated with Iranian parental emotional health, stress and family functioning. (Note: Solid lines indicate a significant relationship: dotted lines a predicted relationship that was not significant.)
inter-relationships impacting on parental well-being which was then tested using MPlus (vers 7) Structural Equation Modelling (Muthe´n & Muthe´n, 1998–2012). The model assumed that the three outcome measures had a reciprocal relationship, i.e. they could have an effect on each other. Moreover these measures would be affected by parental satisfaction with their caring role and also by the amount of informal support available to them. In addition past research, supported by correlational analyses of the data obtained in this study, had identified other potential predictor variables; notably the parent’s gender, the presence of behaviour problems in the child; the diagnosis of ID or ASD, the number of other dependents living at home and the extent to which both parents were involved in the care of the child. 3.2. Testing the model Fig. 1 shows all the variables that were included within the original model, even where they were not statistically significant at the 0.05 level (two-tailed). This has been done because in our original reasoning we expected these to be important, and they may well turn out to be in other research, but this was not the case in the current study. The hypothesised model provided an adequate and robust description for the data (chi-square = 8.363, df = 8, p-value = 0.3988; CFI = 0.999; TLI = 0.996; RMSEA = 0.014, 90 Percent CI: 0.000–0.079). In all, 33% of the variance in the key outcome measure – Poor Family Functioning – was explained within the model. Increased parental stress alone had an explained variance of 23%, while Poorer Emotional Health had an explained variance of 13%. For each significant relationship identified in the model the unit increase on that measure compared to the contrast group is shown in Fig. 1 along with the standard error of the mean. 3.2.1. Parental emotional health As the figure shows, mothers had on average, poorer emotional health as indicated by much higher scores on the General Health Questionnaire (GHQ) than did fathers (Mothers mean 13.45: sd 8.12; Fathers mean 8.62: sd 5.98). In this model, mothers scored nearly 6 points higher than did fathers. Likewise, one parent families had on average a poorer emotional health score (mean = 15.05, sd = 7.05) compared to two parent families’ mean score (11.39 sd = 7.78). When a child had a behavioural problem, this was related to poorer emotional health in parents by some 4.5 units of change on the GHQ scores (se = 1.192). The respective sample means and standard deviations for the two groupings were as follows: (no behaviour problems mean = 9.65: sd = 7.69; behaviour problem present mean = 14.52, sd = 7.01). Conversely, three variables resulted in better emotional health. When other dependents were present in the household, scores on the GHQ tended to be better by around three units (est = 2.827, se = 1.428). The corresponding means and standard deviation were mean = 8.93: sd = 7.15 for those living with a dependent and mean = 12.31, sd = 7.79 amongst those who did not live with dependents.
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Likewise for every unit increase in level of informal support, the GHQ scores improved by over one unit (est = 1.389, se = 0.450). Also for every one unit increase in the level of dissatisfaction with the caring role, parental scores on the GHQ increased by 0.358 of a unit (se = 0.075). The relationships between GHQ scores and with other variables in the model were not statistically significant (p < 0.05 level). 3.2.2. Parental stress Parental stress was modelled in a similar manner to general health. Greater parental stress was experienced by those parents (both mothers and fathers) who had a child with ASD: they scored on average some 12 points higher on the Parenting Stress Index than did parents whose child had ID (est = 12.36: se = 3.37). This substantial difference is also shown in the means (ID mean = 102.52, sd = 21.82; ASD mean = 117.61, sd = 17.44). Parental satisfaction with their caring role had a similar but additional impact on Parental Stress (est = 0.353, se = 0.178) similar to that on their GHQ scores, i.e., the less satisfied one was with a caring role, the more stress it entailed. However the poorer emotional health of parents contributed to increased levels of parental stress by some two points on average (est 1.868: se = 0.375) although the converse – stress affecting emotional well-being – was not significant. Once the health scores were entered into the model, the relationship between single parenting and stress was no longer significant. This was also the case with the other variables associated with poorer emotional health such as parental gender, children’s behaviour problems, other dependants in the household and amount of informal support. This suggests that these variables have a direct effect on the emotional well-being of parents and only indirectly on parenting stress. 3.2.3. Family functioning Families where a child with ASD was present had over a four point deficit in their family functioning scores compared to those whose child had ID (est = 4.434, se = 0.830). The mean scores were as follows: ID mean 14.50: sd = 5.91; ASD mean = 21.24: sd = 5.46. This effect was in addition to the impact ASD had on parental stress which itself was related with poorer levels of family functioning (est = 0.153, se = 0.028). However, there was also a somewhat weaker reciprocal relationship from higher levels of family functioning to lower levels of parental stress (est = 0.907, se = 0.377). Finally, within the model other potential predictors such as age, parental education, home ownership, ethnic background (Fars and non-Fars) and couples did not significantly contribute to the model (p < 0.05). 4. Discussion This study has a number of strengths. It adds another culture to the international literature on parenting a child with developmental disabilities; it contrasted the experiences of parents whose children had a diagnosis of ASD with those who had a diagnosis of ID and fathers as well as mothers were informants. Moreover it controlled for potential confounding variables in the statistical analyses. That said there are two main limitations. Firstly, the self-selected sample may be biased to better informed and educated parents and therefore may not be typical of Iranian families especially those living in rural areas with limited or no contact with support services. Nonetheless the samples recruited were sufficiently large to ensure statistical power had been attained and included families from diverse backgrounds, characteristics and ethnicity. A second limitation is that the data came from a cross-sectional study thus the inferences drawn regarding the causal relationships need to be tested further in longitudinal research, although this aspiration has been hard to realise even in more affluent countries (Special Interest Research Group of IASSIDD, 2013). The resulting model confirmed the impact that having a child with developmental disabilities has on the functioning of Iranian families – particularly children with ASD – but parental stress and the emotional wellbeing of the parents also contributed. In terms of the latter, mothers rather than fathers were chiefly affected but also one parent families were more at risk than two parent households. Moreover it was the behaviour problems shown by the child rather than the type of developmental disability that affected mothers’ wellbeing although recent longitudinal research undertaken in the United Kingdom suggests that poorer maternal health may contribute to children’s behaviour difficulties more so than the converse (Totsika, Hastings, Emerson, Lancaster, & Berridge, 2013). More positively the study identified three factors that appear to boost the emotional wellbeing of parents. These were: having other dependents in the household, more sources of informal support and parents taking satisfaction from their caring role. Although the contribution of these variables was slight, albeit statistically significant, they do provide possible explanations as to why certain parents in all cultures cope better than others. Similar findings have emerged from previous studies in other countries (e.g. Ingersoll & Hambrick, 2011), although the presence of other dependents in the household, such as ageing parents, may be more salient in Iranian cultures with their emphasis on extended families providing mutual support (Samadi & McConkey, 2011). The relationship between emotional health and parenting stress was not especially strong once other variables were taken into account by the model which may explain the divergence from previous studies reviewed earlier. Rather the dominant influence on parental stress was the nature of the child’s disability. Children with ASD had a much greater impact on parent–child stress compared to children with intellectual disabilities. Moreover this held for both mothers and fathers and notably the impact of ASD was independent of the behaviour problems exhibited by the child which as previously noted, affected parents’ emotional wellbeing rather than stress (Totsika et al., 2013). This differential impact of ASD compared to ID
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on parental stress has not been previously reported which may suggest that this finding could be particular to Iranian culture and the expectations it places on children who have no obvious impairments. But then again past research internationally has not sufficiently investigated the differential impact that developmental disabilities may have on different indicators of parental well-being. Of particular interest would be the impact on Iranian parents of children having co-morbidity of ASD with ID which may have been present to some extent in these samples but was not formally recognised in the diagnoses given to families. This would serve to replicate the finding from a UK study which suggest that ASD either alone or with ID that is linked with poorer emotional wellbeing of mothers (Totsika, Hastings, Emerson, Lancaster, & Berridge, 2011). Three further factors contributed to parental stress. First, it was increased by poorer emotional health of parents although interestingly in this model, the converse was not statistically significant. As noted above, this relationship is a wellestablished finding internationally although further studies could usefully explore the direction of influence. For example if parents’ emotional wellbeing improves does this reduce feelings of stress? Indications from intervention studies with Iranian families suggests that this may be so (McConkey & Samadi, 2013). Second, parents’ satisfaction with their caring role also influenced their feelings of stress which was in addition to the impact it had on parents’ emotional wellbeing. To date the international literature has tended to emphasise the burden and strain that children with developmental disabilities can place on families with relatively little attention paid to their positive experiences. In the study the measure used was derived from research undertaken in affluent western cultures which may not adequately reflect the experiences of parents in other cultures (Dyches et al., 2004). Future research could usefully explore the development of a culturally sensitive tool that captures better the personal gains accruing to both mothers and father in their caring role. Third, parenting stress had a reciprocal relationship with ratings of family functioning; with the latter contributing to parental stress albeit the stronger relationship was with stress and poorer family functioning. Again this replicates the findings from previous studies in other cultures. The findings are suggestive also of the factors that might ameliorate parental stress such as improved family functioning and parents deriving greater satisfaction from their caring role. Increased social support would seem to have less direct impact on parental stress but rather indirectly through improved parental well-being. However by far the biggest reduction on parental stress is likely to come from parents and families understanding and managing better their child’s ASD. Compared to families whose children have ID, these families may need additional and ongoing support to manage the relationships among parents and siblings (Gau et al., 2012; McConkey & Samadi, 2013). 5. Conclusions The model derived in this study of the impact on Iranian parents of having a child with a developmental disability is not only of theoretical interest. It can guide practitioners in the provision of support for family carers in Iran as well as internationally. While the model proved to be robust statistically, it should be noted that on all three predictor measures of emotional wellbeing, stress and family functioning, there were high levels of unexplained variance. Thus supports will need to be tailored to the individual needs of families and not based on generalised assumptions. Also the study has demonstrated the value of extending to other societies the research methodologies that have evolved in more developed countries and of testing the robustness of generally accepted relationships in other cultures. Crosscultural comparisons could be further enhanced by identifying and applying the same measures with comparable samples drawn from contrasting countries and cultures. The measures used in this study show promise in this regard. Conflict of interest The authors had no conflict of interest in undertaking this research. References Abidin, R. (1990). The parental stress index: Short form. Charlottesville, VA: Pediatric Psychology Press. Azar, M., & Badr, L. K. (2010). Predictors of coping in parents of children with an intellectual disability: Comparison between Lebanese mothers and fathers. Journal of Pediatric Nursing, 25, 46–56. Benson, P. 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