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Throughout the world, increasing numbers of children are being diagnosed with autism spectrum disorders (ASD) (Fombonne 2009; Xiang & Carrie 2010). A growing body of research from Western countries has documented the impact these children have on their families, notably in terms of the stresses parents experience and their emotional well-being. The purpose of this study is to investigate if this holds for mothers and fathers from other cultures, in this instance Iran.
Significantly elevated levels of stress have been consistently reported across many different studies (Pisula 2011) including those involving large-scale populations (Montes & Halterman 2007). Mothers appear to show higher levels of stress than fathers, a difference that is less likely to arise with parents whose children have other developmental disabilities such as Down syndrome (Dabrowska & Pisula 2010). However, the difference between mothers and fathers in levels of stress seems to become more pronounced as the child gets older as it is less apparent with newly diagnosed toddlers (Davis & Carter 2008). But as with other developmental disabilities (e.g. Hastings 2002), a clear relationship has been established between increased parental stress and the severity of behaviour problems exhibited by the child with ASD, such as conduct disorders (Tomanik et al. 2004; Lecavalier et al. 2006). Moreover, there is evidence that parental stress and behavioural problems in children with ASD aggravate each other over time (Benson & Karlof 2009).
The emotional well-being of parents has also received attention. 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, their depression scores were also significantly higher than those of mothers whose children had other developmental disabilities (Olsson & Hwang 2001). Indeed, mothers bringing up children with autism reported poorer mental health in general (Montes & Halterman 2007) and those whose children exhibited higher levels of behavioural problems experienced significant psychological distress (Bromley et al. 2004). The emotional well-being of fathers has received less consideration with no differences reported between parents of toddlers (Davis & Carter 2008) whereas Olsson & Hwang (2001) reported that mothers were significantly more depressed than fathers. Likewise, Allik et al. (2006) found that mothers, but not fathers who are caregivers of school-age children with ASD, were at increased risk of poorer health although the differences were more apparent with physical illnesses.
A small number of studies have explored the relationship between parental stress and emotional well-being. Not surprisingly, increased stress is associated with poorer emotional health (e.g. McConkey et al. 2008). Furthermore, Benson & Karlof (2009) found that stress proliferation over time accentuated parental depression. Few studies have investigated the inter-relationships between mothers and fathers in terms of stress and emotional well-being although research conducted by Hastings (2003) is a notable exception. He reported that fathers' mental health contributed to maternal stress but the converse did not hold.
More broadly, Smith et al. (2010) suggested that stress is an important predictor of family functioning and various studies have identified the role that social support within families can play in moderating maternal stress (Dempsey et al. 2009). 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 et al. 2007). Altiere & von Kluge (2009) proposed that better cohesion within families resulted in more positive coping strategies.
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). The concept of disability differs across cultures as does the way in which children's behaviours are construed (Cho et al. 2003). Moreover, societal influences may affect the way parents appraise the stressors they experience and their styles of coping (Dyches et al. 2004). For example, Latina mothers in the USA reported lower levels of stress and better psychological well-being than non-Latina mothers caring for youth or adults with autism (Magana & Smith 2006). By contrast, Taiwanese parents of youth and adults with ASD had higher levels of depression compared to USA mothers, which the authors attributed to differences in coping strategies (Lin et al. 2011). These studies have prompted a growing appreciation of the need in Western countries to adjust family support services to the eco-culture of immigrant families (Welterlin & LaRue 2007), an argument that 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 (Crabtree 2007).
Nonetheless, several recent studies in Japan (Mori et al. 2009), Malaysia (Norizan & Shamsuddin 2010) and Turkey (Bilgin & Kucuk 2010) have reported similar findings to those noted for Western countries, namely high levels of stress among mothers whose children had developmental disabilities such as ASD and Down syndrome which were acerbated by the child's behaviours and by maternal depression. Similarly, a cross-cultural comparison of Irish, Taiwanese and Jordanian mothers found that problem behaviours exhibited by the child were correlated with poorer maternal well-being and stress (McConkey et al. 2008).
Mother–father differences have been rarely studied although Rimmerman et al. (2003) reported no differences between Israeli mothers and fathers in levels of child-related stress, a finding also confirmed by Azar & Badr (2010) with Lebanese parents of children with intellectual disabilities (ID). However in both studies, access to informal support was associated with less stress, particularly with mothers, a relationship also endorsed with Arab mothers of children with ID living in Northern Israel (Duvdevany & Abboud 2003) and by the reports from Turkish mothers as to how they coped with stress arising from a child with ASD (Bilgin & Kucuk 2010).
The present study aimed to add to the international literature by focussing on both mothers and fathers of children with ASD in Iran. Iranian society is distinct from other Islamic societies of the Middle-East and Central Eurasia in terms of its long history of civilisation, its geographical location, separate language (Persian) and religious denomination (Shia Muslim). Information about the impact on parents would assist with the development of more family-centred support services within Iran and possibly with Iranian immigrants in Western countries (Welterlin & LaRue 2007). In addition, the study would further confirm if ASD has a consistent impact on parental well-being across cultures.
Hence, the specific aims of the study were:
- to document the extent of parental stress, emotional well-being and family support for a sample of families drawn from a distinct culture that has not been previously studied;
- to contrast the impact of a child with ASD on mothers and on fathers as the latter in particular have often been neglected in past studies and play a particularly significant role in Iranian society; and
- to identify for this sample the variables that are associated with parental stress and emotional well-being, notably the child's behaviours and level of functioning, the mutual supports within families and overall ratings of family functioning.
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Three main conclusions can be drawn from these findings. First, in common with findings from other countries, Iranian mothers report increased stress and poorer health arising from parenting a child with ASD. Fathers' health is similarly affected although not to the same extent as mothers. However, in comparison with two previous studies that have used the same measure of stress – the Parenting Stress Index – Iranian mothers and fathers had higher overall stress scores than Japanese parents of young people with ASD (Mori et al. 2009) and Lebanese parents of children with ID (Azar & Badr 2010). In part this could be an artefact of the recruitment strategies used in this study. Parents who are more stressed may be more eager to participate in a study if they felt it could be of benefit to them. Equally though, it could reflect the relative dearth of support available to Iranian parents compared to other countries.
A second conclusion relates to the correlates of poorer health experienced by Iranian parents in addition to the stresses of parenting. As previously reported in the literature, mothers reported poorer health more so than fathers (e.g. Olsson & Hwang 2001). In addition, higher levels of stereotyped behaviours shown by their child result in poorer health and indirectly increase parental stress, a well-established finding across various cultures and different developmental disabilities (e.g. Norizan & Shamsuddin 2010; Manning et al. 2011). However, Iranian parents who had university education reported better health, a common finding in international studies (e.g. Emerson et al. 2006). Such parents are also likely to have increased access to information about autism through the Internet and books that less educated parents lack (Samadi et al. 2011).
Rather surprisingly, parents whose children had fewer autism traits as measured by the autism index scores also rated their health as poorer. Indeed, somewhat similar findings have been reported by Mori et al. (2009) in that Japanese mothers and fathers of young people with Asperger's syndrome had higher stress levels than parents whose children had more marked forms of autism. This variation may derive from the ambiguities parents experience when their child has milder forms of ASD and as to how they should respond to their more unusual traits. Further studies are needed to understand more fully the mutual impact of children's behaviours and parental well-being.
A third conclusion to emerge from this study is that certain variables may accentuate or moderate parental stress separately from health ratings. Parents who lived with extended families and parents both of whom were involved in the care of the child reported lower stress scores although neither of these variables influenced parental health ratings. This concurs with previous international research into the importance of intra-family support with Japanese families (Mori et al. 2009) or more broadly the availability of informal supports for Lebanese (Azar & Badr 2010) and UK families (Bromley et al. 2004). Moreover, single parenting has been linked with higher stress (e.g. Norizan & Shamsuddin 2010) although this was not the case in the present study possibly due to the small number of single parents who were recruited.
More puzzling is the lack of relationship in these data between family functioning and parental measures of stress and emotional well-being reported in other studies (e.g. McConkey et al. 2008; Lin et al. 2011). It could be that the chosen measure of family functioning may not have been sufficiently sensitive to detect differences among the parents and certainly the qualitative comments reported by some mothers especially bear out the added stress they experienced from poor communication within the family.
A number of further cautions need to be expressed with regard to the study. A self-selected sample of better educated parents drawn mainly from the capital city was recruited and these findings may not be representative for all Iranian families who have a child with ASD. However, it is conceivable that less educated families living in more rural areas may show even poorer health and higher levels of stress based on the findings from this sample. But these shortcomings also serve to highlight the caution that needs to be exercised when comparing results from studies undertaken in different countries (Hatton 2004). Equally international understanding of the impact of ASD on families would be greatly facilitated by studies that endeavoured to obtain more representative samples of parents, ensured that common criteria were used to assess the children's autism and utilised common measures of parental stress, emotional well-being and family functioning along with pertinent demographic data. Even so this study is further confirmation that children with ASD adversely affect their parents' well-being irrespective of their cultural background and to a greater extent than for other developmental disabilities.
Finally, an underlying rationale for undertaking this particular study was to gain an insight into the personal supports that Iranian families may require if they have a child with ASD. International experience suggests that the strains of caring for a child can be alleviated through use of particular coping strategies such as problem-focussed coping (e.g. Dabrowska & Pisula 2010) and that parental predisposition to use certain coping strategies may mediate the cultural differences reported among parents (Lin et al. 2011). Nevertheless, our understanding remains limited as to how parents from diverse cultural backgrounds can be guided in their use of coping strategies (Ghosh & Magana 2009), although the provision of accurate information regarding the child's condition and advice on managing the child's behaviours at home are likely to be important ingredients (Samadi et al. 2011). Further research into the coping strategies of Iranian parents would be helpful.
Families across all cultures also seem to benefit from greater access to formal and informal supports (Manning et al. 2011) and notably opportunities for parents to learn from one another (Singer 2006). Given the professional culture and practices in Iran, it is a particular challenge to provide such family-centred services but a recent study has shown how improved parental well-being and better family functioning resulted from a seven-session, group-based course for parents and these changes were sustained up to 12 months later particularly from parents who maintained contact with one another after the course (McConkey & Samadi 2012). Hence, a priority for professionals in health and educational services in Iran, and indeed internationally, is to become better informed about ASD and the ways in which they can support parents to achieve better health and well-being.