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Research Article

Lived experiences of Arabic working mothers raising children with disabilities: navigating rehabilitation and support services

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Received 20 May 2023, Accepted 10 Jun 2024, Published online: 20 Jun 2024

Abstract

This article explores the experiences of working mothers raising children with disabilities. The study was conducted in the United Arab Emirates, which has a raft of policies empowering and facilitating the development of children with disabilities and their families. Drawing on the social model of disability, this article presents findings from qualitative data collected from both national and expatriate working mothers. It aims to provide insights into their work–caregiving balance and the development of their children with disabilities. Furthermore, this article identifies common reactions, coping strategies and expressed needs among both national and expatriate mothers. However, it highlights significant differences between the two groups in terms of access to rehabilitation and support services for children with disabilities. This research contributes to existing literature on caregiving experiences and offers recommendations for tailoring support services to meet the needs of working mothers raising children with disabilities in the United Arab Emirates.

Points of Interest

  • This article explores the caregiving experiences of 24 nationals and expatriates raising children with disabilities in the United Arab Emirates.

  • The United Arab Emirates government is encouraging greater participation in the workforce, particularly among women, which could have implications for those raising children with disabilities.

  • The findings reveal shared challenges/reactions to children’s diagnoses; however, differences were noted in the accessibility of rehabilitation and support services for children of nationals and expatriates.

  • The insufficient or lack of available services sheds light on the experiences of mothers raising children with disabilities.

  • The study concludes with a recommendation for employers to make provisions specifically for expatriate mothers raising children with disabilities in the United Arab Emirates.

Introduction

Over the past 50 years, the United Arab Emirates (UAE), once a British protectorate, has transitioned from a largely rural, underdeveloped and traditional country to an urbanised, modern, sophisticated and high-income nation (De Bel-Air Citation2018; Grant, Shabbir Golawala, and McKechnie Citation2007; International Monetary Fund Citation2022). Due to the booming oil and services industries, the UAE has attracted a large number of foreign workers, resulting in a notably high ratio of non-citizen workers to citizens in the country (De Bel-Air Citation2018; Grant, Shabbir Golawala, and McKechnie Citation2007). Out of a population of nearly 10 million, over 80% of residents are expatriates working within the country (The Quality Assurance Agency for Higher Education Citation2017). To address the difference between the number of citizens and that of expatriates, the government introduced the Emiratisation policy, which aims to promote the employment of citizens, especially in the private sector (Aljanahi Citation2017; Al Murshidia and Al Riyamib Citation2020; Modarress, Ansari, and Lockwood Citation2013; Thompson and Wissink Citation2016). The employability of both nationals and expatriates can have implications for efforts to create equitable access to essential services in society. Given the UAE’s large expatriate population and the government’s commitment to promoting the employability of citizens, there is a pressing need to gain comprehensive insights into the experiences of working mothers raising children with disabilities. Such insights would provide valuable guidance for national policies in this domain.

In this study, mothers were conceptualised as either biological mothers or female caregivers of children with disabilities. According to the World Health Organization (Citation2011), 10%–15% of individuals across all populations live with some form of disability. In the UAE, the available evidence points to an increasing number of children with disabilities (Virolainen, Hussien, and Dalibalta Citation2020). Despite the sizeable number of individuals with disabilities in society, parenting children with disabilities has been associated with stress, unemployability, financial problems, negative attitudes and strain within families (Abdat et al. Citation2023; AlQahtani and Efstratopoulou Citation2023; Blackwell Citation2024; Cheshire, Barlow, and Powell Citation2010; Dogbe et al. Citation2022; Dukmak Citation2009; Garip et al. Citation2017; Kyeremateng et al. Citation2019; Lamba et al. Citation2022; Mbamba and Ndemole Citation2021; Morgan Citation2023; Niedbalski Citation2023; Oti-Boadi Citation2017; Oti-Boadi, Oppong Asante, and Malm Citation2020a; Oti-Boadi, Dankyi, and Kwakye-Nuako Citation2020b; Singh, Shikarpurya, and Keese Citation2023). These negative effects of parenting children with disabilities are particularly pronounced in non-Western countries, where issues of disability intersect with culture in complex ways. For instance, the onset of disability is often linked to spirituality or perceived as caused by an evil person (AlQahtani and Efstratopoulou Citation2023; Anthony Citation2011; Baffoe Citation2013; Hadidi and Al Khateeb Citation2015; Lamba et al. Citation2022; Morgan Citation2023). As a result, individuals in the country may tend to isolate or discriminate against family members with disabilities (AlQahtani and Efstratopoulou Citation2023; Lamba et al. Citation2022). While education plays a role in challenging stereotypes about the causes of disability, negative attitudes persist in many non-western countries.

In contemporary global discourse, there is a strong emphasis on fostering a just, fair, equitable and inclusive society that celebrates diversity (United Nations Citation2015; Wescott, MacLachlan, and Mannan Citation2021; World Health Organization Citation2011). Reflecting this, the United Nations (Citation2007) established the Convention on the Rights of Persons with Disabilities (CRPD), which provides guidelines for supporting the development of children with disabilities. Under this legal framework, governments are encouraged to create environments conducive to the growth of children with disabilities and their families (Keller, Al-Hendawi, and Abuelhassan Citation2016). This includes the formulation of thoughtful policies and the provision of public education regarding the generation and acceptance of diversity in society. The implementation of the CRPD aligns with global efforts to alleviate extreme poverty, which are advocated through the Sustainable Development Goals (United Nations Citation2015; Wescott, MacLachlan, and Mannan Citation2021). These legal frameworks aim to enhance service provision for all individuals, including those with disabilities and their families. As a signatory to the CRPD, the UAE has committed to the global initiative to eradicate poverty and has enacted domestic disability laws to enhance the well-being of individuals with disabilities and their families (Gaad Citation2011 2019; Keller, Al-Hendawi, and Abuelhassan Citation2016).

In the UAE, children with disabilities are referred to as ‘children of determination’, which is an empowering approach taken by the country’s leadership to ensure equitable access to services for all (Gaad Citation2019). Despite this positive approach, some studies conducted in the UAE have reported challenges similar to those documented elsewhere regarding the struggles experienced by parents raising children with disabilities (AlQahtani and Efstratopoulou Citation2023; Crabtree Citation2007; Lamba et al. Citation2022; Morgan Citation2023). Furthermore, in the country, parents are often found to lack sufficient knowledge and access to appropriate services for the development of their children (Crabtree Citation2007; Lamba et al. Citation2022; Opoku et al. Citation2023). Some studies have also reported parents’ dissatisfaction with rehabilitation services in the UAE (Dukmak Citation2009). However, what remains unexplored is the specific experience of working mothers raising children with disabilities in the country.

Emirati society embodies modernity, innovation and deeply rooted cultural values (Al Oraimi Citation2011; Watson Citation2021). This commitment is evident in the UAE’s national vision (https://uaecabinet.ae/en/uae-vision), which emphasises embracing and promoting these qualities. The UAE is also primarily a conservative Muslim society, characterized by Arabic language and common social norms (https://uaecabinet.ae/en/uae-vision). The country promotes mutual respect among its diverse inhabitants (https://uaecabinet.ae/en/uae-vision) and typically assigns women domestic responsibilities such as childcare and homemaking (Al Oraimi Citation2011; Sikdar and Mitra Citation2012).

Currently, the government actively pursues increased participation of nationals – both males and females – in the workforce through its Emiratisation policy (Aljanahi Citation2017; Al Murshidia and Al Riyamib Citation2020; Modarress, Ansari, and Lockwood Citation2013; Thompson and Wissink Citation2016). This policy has implications for caregiving and the upbringing of children with disabilities. For instance, in the UAE, mothers are more likely to be the primary caregivers of children and to be responsible for their well-being (Crabtree Citation2007; Lamba et al. Citation2022). This is in addition to the other domestic and caregiving duties that working mothers are expected to perform. Mothers are supposed to perform such duties in an environment where children with disabilities encounter challenges in accessing essential services (Lamba et al. Citation2022). Therefore, policymakers require effective guidelines to mitigate the dual burden of work and care placed on mothers. Hence, understanding the experiences of working mothers raising children with disabilities in the UAE becomes paramount. This study contributes to the literature by comparing the experiences of Emirati and expatriate mothers who navigate work and caregiving responsibilities while raising children with disabilities in the country.

Contextualisation

This study was guided by the social model of disability, which emerged as a response to the medical model of disability (Oliver Citation1992, Citation2013). This framework was chosen because it is intertwined with the notions of equity, human rights and inclusivity (Berghs et al. Citation2019; Degener Citation2016a, Citation2016b). Proponents of the medical model believe in a ‘client–server’ relationship, where the server, considered the expert, is tasked with providing individuals with disabilities, referred to as clients, what they deem pertinent for their development (Degener Citation2016a). Clients are expected to passively accept the offerings of the server under this model, as they are perceived as dependent and disregard what may be beneficial for them (Oliver Citation1992). Proponents of the social model have criticised the medical model as a violation of the rights of individuals living with disabilities (Berghs et al. Citation2019; Degener Citation2016a, Citation2016b). They have contended that the advocates of the medical model do not see the capabilities of persons with disabilities, who are able to contribute to their development (Oliver Citation2013). They have also suggested that this model perpetuates negativity towards persons with disabilities, who are envisaged as incapable, needy and dependent on other members of society (Oliver Citation1992, Citation2013).

The creators of the social model argue that society is the cause of disability, not the individual (Oliver Citation1992, Citation2013; Terzi Citation2004). According to them, society has not put in place mechanisms to enhance the participation of individuals with disabilities in everyday activities (Berghs et al. Citation2019; Degener Citation2016a, Citation2016b; Oliver Citation1992, Citation2013). The scholars in question have called for the establishment of more affirmative policies for such individuals. This includes, but is not limited to, adapting public places to suit all persons and offering educational, health and social protection to those with disabilities (Berghs et al. Citation2019; Degener Citation2016a, Citation2016b; Oliver Citation1992, Citation2013). The recent international push (United Nations Citation2007; World Health Organization Citation2011) for countries to formulate legislation and policies that facilitate the development of individuals with disabilities is believed to be a product of the social model.

The actions undertaken by the UAE government could imply its alignment with the principles of the social model of disability. The UAE demonstrates a commitment to robust social protection measures for its citizens (Freedom House Citation2010; Machado et al. Citation2018), and expatriate workers in the country are entitled to social support through their employers (Sabates-Wheeler and Waite Citation2003). Both citizens and expatriates are at liberty to choose between public or private education and health care services (Federal Government of United Arab Emirates Citation2006). Given this context, there is a need to explore the lived experiences of working mothers raising children with disabilities in the UAE to address the following research questions:

  • How do working mothers raise their children with disabilities in the UAE?

  • What are the needs of such mothers?

Methods

This qualitative study employed a phenomenological approach to explore the lived experiences of working mothers of children with disabilities. Working mothers were operationalised as citizens or expatriates who were gainfully employed in a reputable organisation and who were raising children with disabilities. Expatriates raising children in the UAE mostly tend to hold jobs offering excellent salaries. Citizens also usually earn reasonably high wages. Therefore, the working mothers considered in this study could be described as middle- and high-income earners.

Anecdotal evidence indicates that the UAE is predominantly inhabited by Muslims of Arabian descent who share a common language, religion and sociocultural practices. Arabians are more inclined to reside in the country for an extended period, which necessitated their inclusion in this study. The research examined Arabian mothers, both expatriates and citizens, who consider the UAE their home. This approach was deemed helpful in better understanding parents’ lived experiences of having a child with a disability. To capture this reality, the experiences of individuals were studied and recorded in ways that were unique to each person (Creswell Citation1998). This phenomenological approach required an evolving design, in which participants described their lived experiences, stories, beliefs and anecdotal accounts (Hopkins, Regehr, and Pratt Citation2017). Therefore, in-depth interviews were used to collect comprehensive and detailed data.

Study participants

The participants in this study were working mothers of children with disabilities recruited from the region of Abu Dhabi in the UAE. Abu Dhabi was chosen because it is the nation’s capital and has a significant population of individuals with disabilities (Statistics Centre – Abu Dhabi Citation2020), as well as public and special schools that were accessible to the researchers. Parents who had enrolled their children with disabilities in public or private schools were selected to obtain insights into their experiences. The study involved both Emirati and expatriate mothers, as approximately 80% of the country’s population consists of expatriates. Participants were chosen using purposeful and snowball sampling methods, primarily relying on word-of-mouth referrals. These sampling techniques were deemed appropriate because they ensured the inclusion of individuals who had firsthand experience of the phenomenon being studied and met the specified inclusion criteria.

A sample comprising 24 participants was obtained. Phenomenological studies generally involve a range of participants between 5 and 25 (Mason Citation2010). However, many experts rely on saturation to determine the sample size, which is the point at which no new information can be gathered. Therefore, it was decided that the number of participants interviewed would be determined once saturation was reached during the coding process.

The inclusion and exclusion criteria allowed the researchers to purposefully select individuals for participation. Concerning the inclusion criteria, the participant had to be a working mother of a child aged 6–18 with a formal diagnosis of disability. In addition, proof of the diagnosis (as given by a school or rehabilitation centre) was required. After the diagnosis was confirmed, the mother had to sign a consent form; then, the research assistants contacted her by telephone to determine her availability. Mothers with children who were out of school were not considered for participation.

The participants’ ages ranged between 26 and 50 years. Among them, 13 were UAE citizens. Additionally, there were two participants each from Syria, Egypt and Oman, and one participant each from Jordan, Tunisia, Palestine, Saudi Arabia and Lebanon. Regarding educational backgrounds, the mothers’ qualifications were as follows: 1 had no formal qualification, 3 had high school certificates, 5 had diplomas from tertiary institutions, 14 had bachelor’s degrees, and 1 had a doctoral degree.

The group of children consisted of 8 girls and 16 boys, ranging in age from 6 to 18, and they exhibited a range of disabilities. Many had been diagnosed with autism spectrum disorder (12), while others were living with cerebral palsy (2), Down’s syndrome (3), intellectual disability (2), communication disorder (2), deaf (1) and attention deficiency hyperactivity disorder (ADHD) (2). Among these, four were comorbid conditions.

Data collection

The data were collected through in-depth interviews that used open-ended questions. According to Morse (Citation2015), elaborate descriptions can be obtained by spending considerable time with participants to elicit authentic, natural responses. In this study, this method permitted the collection of rich information because it allowed the participants to offer their unique contextual responses. This approach was suitable for addressing the research questions and uncovering the significance of these individuals’ experiences. As Seidman (Citation2006) noted, interviewing as a means of data collection is both time consuming and costly, but it is essential for identifying the true meaning of data in phenomenological studies. A semi-structured interview guide was developed based on a review of the literature.

Procedures

The study and its protocols were submitted for approval to the Human Research and Ethics Committee of United Arab Emirates University (ERH_2022_2231). Next, special and regular schools were contacted to facilitate the recruitment of parents. While some schools cooperated, others declined. The schools that collaborated contacted parents on behalf of the research team and provided the contact details of those who met the inclusion criteria. After each interview, the interviewees were asked if they knew other parents who would be interested in participating in the study. This process continued until data saturation was reached.

The data were collected between January and April 2022. The interviews were conducted in either Arabic or English. Before each interview, the participants were asked which language they preferred to use. The data were collected by SA, AA, AG and FA, who are proficient in both languages. Before they were interviewed, all participants were assured that their identity and city of residence would not be disclosed when reporting the study’s findings, and they were informed that the raw data would not be passed on to anyone outside the research team. All the participants signed an informed consent form before taking part in the study.

Data analysis

Each participant was assigned a code based on the name of their interviewer and the type of disability their child had. The interviews were transcribed verbatim by the research team. The transcripts were then sent to the participants to verify that their responses had been accurately captured. Thematic analysis was deemed appropriate for this study, as raw data can reveal patterns that can be identified by using codes, categories and themes (Saldaña Citation2013). The data were subjected to thematic analysis following the guidelines proposed by Braun and Clarke (Citation2006), which include reading the transcripts (familiarising), generating tentative codes, sorting and mapping, thematising and, finally, reporting.

The first step was to read the interviews. This was followed by coding, which was undertaken by a graduate student who was a member of the research team. The student’s coding was compared to that done by the other members of the team. Following transcription of the interviews and synthesis of the findings for accuracy in interpretation, a peer debriefing session was held among assistant researchers and the principal investigator. A list of codes, categories and themes was formulated thanks to this process. Finally, the researchers developed a coding framework to identify similarities and differences in the participants’ responses. These were discussed with another academic who had expertise in qualitative research.

Similar codes were assigned common categories before being grouped under a priori themes. The categories were then copied and pasted into a new document, after which the associated quotes were extracted. The lead researcher continued to write the results section, which was shared with the other researchers for review. To minimise bias in data interpretation, the researchers used a reflexive journal during the analysis to examine their beliefs and opinions and to assess their potential impact on the study. Using a reflexive journal helped improve the accuracy and objectivity with which the data were described and constructed (Cunliffe Citation2016).

Results

This section presents the findings of our phenomenological study, which explored the lived experiences and challenges of working mothers of children with disabilities. We also investigated the availability of support for these mothers and identified areas where additional help was needed.

Diagnosis and coping strategies

Some disabilities were diagnosed during pregnancy, while others, such as autism spectrum disorder, were identified later in childhood. The mothers reported observing symptoms such as delayed speech and motor development, lack of responsiveness and focus, and unusual behaviours (e.g. walking on toes) during the ages of one to four. After receiving their child’s diagnosis, all the mothers reported experiencing shock, disbelief and depression. Their initial reactions were also characterised by intense sadness, stress, uncertainty and concern for their child’s future. One mother described feeling guilty and questioning whether she was responsible for her child’s condition (Mona, an Egyptian mother). She said that the first three months following the diagnosis were challenging and that she experienced depression during this time. However, she eventually accepted the situation and thanked God for her daughter, whom she considered a blessing. Another mother described feeling depressed for approximately one year after her child’s diagnosis (Zainab, a Saudi Arabian mother).

Six mothers discussed the ordeals they went through regarding the professionals involved during and after the births of their children. Some recounted that they were told to terminate their pregnancies; however, they refused and decided to raise children with disabilities. Two participants also said that the news of their children’s diagnoses was shared rather unprofessionally by the healthcare staff, who are expected to know better. Below are two excerpts from the interviews.

In the seventh month, the news was that the child would pass away after seven hours because of a condition that are ultimately fatal. The issue was not that I would be raising a child with a disability but that this child would not survive. However, when the child reached the age of one, we realised that his chances of survival were greater. I hoped for the best and wanted him to live. My thinking was that he would reach a stage where he could live a normal life. I fought for the child to live, not just to raise a child with disabilities. Instead, they asked me to terminate the pregnancy in the seventh month due to my health being at risk if the pregnancy continued to the ninth month. (Fatima, an Emirati mother)

The paediatrician in the hospital shared the news in a bad way, and I did not know that my daughter had Down’s syndrome because, of course, I am not a doctor. I asked the doctor why my daughter’s eyes looked this way, and he said, ‘Don’t you know that your daughter has Down’s syndrome?’ I was surprised and shocked, and it took me three months to be myself [again]. (Ameera, an Egyptian mother)

Two major coping strategies were mentioned by the participants. The first one was turning to religion, which can be a powerful source of comfort, hope and support for mothers dealing with the challenges of raising children with disabilities. Over time, the mothers generally came to accept their children’s conditions and expressed satisfaction and gratitude to God. Islam was cited as a significant factor in helping these mothers come to terms with their children’s diagnoses, along with the support their husbands and families provided. In addition to offering comfort and assistance at an individual level, religion can also help mothers find meaning and purpose in their experiences. Some mothers may view their children’s disabilities as part of a larger plan or purpose and may find solace in the belief that God has chosen them for this role. For instance, one participant reported feeling proud, and she believed that God had chosen her to have this experience. She expressed love for her son and acceptance of his condition (Omaha, an Omani mother). Another participant shared the following thoughts:.

Initially, there was emotional chaos, confusion, and difficulty in dealing with and accepting the situation. As time went by, I came to understand [what had happened], and it was a nice feeling when I started treating the child like his siblings, without distinction. I accepted the situation wholeheartedly and thanked God. (Anwar, an Emirati mother)

Another participant expressed the following:.

I feel sorrow for him, and it saddens me when he is unable to express his needs. However, I am grateful to God, and I am immensely proud of him. I am prepared to persevere and fight for him. (Mariam, Lebanese mother)

Family support was identified as a significant source of comfort. The majority (n = 16) of the participants reported satisfaction with the help they received from their families, particularly those who had stable relationships with their partners. Even in cases of separation, one mother reported receiving continued support from the child’s father, and she hoped that he would always be around for this purpose (Zainab, Saudi mother). Community awareness was found to vary, with some mothers (n = 15) describing high levels of awareness, while others (n = 7) characterising it as moderate. In particular, most participants said that their children were generally accepted by members of their community. In the UAE, there has been a notable improvement in overall community awareness over time. Three excerpts summarise the experiences of the interviewees in this domain:.

The continuous emotional support from my husband and other children has been invaluable. My daughter is the eldest in my family. I rely heavily on my husband as well as the nanny. I have a good relationship with my husband and siblings, who support me consistently and praise God. (Shahad, an Emirati mother)

All my family members, including my husband and children, have been supportive. I rely on them when I am absent during family gatherings, when I’m at work, and especially when I’m unwell. (Hala, an Emirati mother)

Some bullies joke about him and make fun of his condition. Other people provide support and encourage us. The teachers and doctors provide him with the best treatment and education. (Reem, a Jordanian mother)

In contrast to these experiences, one mother said that her situation was complicated by ongoing family problems and issues related to being separated from her husband. However, she explained that she and her husband had reached an agreement for the benefit of their child and that her husband was understanding, cooperative and educated. This support helped mitigate the psychological impact of their separation (Zainab, Saudi mother).

Balancing work and care

All of the mothers who took part in this study spoke of difficulties in balancing work and raising children with disabilities. They reported employing various strategies to try to achieve a balance. For instance, eight Emirati mothers said that they hired assistants to support their children at home and at school while they worked. One Emirati participant who had a child with ADHD said, ‘Sometimes, the nanny helps him by getting him the clothes, but he can wear them by himself’.

I dedicate 90% of my life to my children and 10% to caring for myself and my social life. When I return home from work, I am exhausted. So, my husband got me nannies and home teachers to help me with my child. (Aysha, an Emirati mother)

In contrast, the expatriate mothers explained that they shared childcare responsibilities with family members to provide care during working hours. Some also said that they made sure their children were enrolled in schools close to their places of work. The following interview excerpts summarise the experiences of these participants:.

My husband stood by me; he was the one who got me out of the depression. I did not accept the child as a mother. They [family] stood by me a lot. Her relationship is very good with her brothers. Praise be to God. God blessed me with a second daughter, X’s sister. The sister supports her, and I can work because they have been very supportive. (Ameera, Egyptian mother)

I feel like I should leave work and focus more on my daughter because she is my priority. Now, my daughter is studying where I’m working, and I think that people there make her feel safe simply because they [colleagues] know that I’m close by rather than at home. (Hamda, Palestinian mother)

Five Emirati mothers said that they had informed their potential employers or supervisors of their caregiving responsibilities and had received support from their workplace supervisors. The situation was different for expatriate mothers, who often preferred working in locations close to their homes. Two participants shared the following details:.

There have been some shortcomings. I hope they reconsider the needs of individuals with disabilities. I request that these institutions provide social support, such as more flexible job opportunities for me as a mother, as my daughter requires more care. They should also provide monthly financial support for these individuals. (Dina, an Emirati mother with a Yemeni spouse)

At first, I didn’t want to work, as my child was diagnosed with autism or a similar condition. However, here in the UAE, there are many facilities and accommodations for working mothers who have children with disabilities, including flexible schedules and meetings related to their children. Thank God for these opportunities. (Fatima, an Emirati mother)

Still, both the Emirati and expatriate mothers said that balancing work and childcare responsibilities remained a significant challenge. An Egyptian mother stated, ‘My work is hard and demanding. I am always under pressure from my work and at home’ (Mona). Similarly, a Jordanian mother said, ‘I feel that I need some rest. I feel that my child is not developing as I want. I struggle to balance my time’ (Reem).

Despite this evidence, eight participants stated that their performance at work was above average. They explained that their children’s conditions were major sources of motivation to work hard. An Emirati mother said, ‘My child is my source of motivation at work. I feel that 24 h a day is not enough, as I have a lot of responsibilities’ (Khuloud). Two other interviewees contributed the following thoughts:.

Initially, there was an impact on my work because I had no experience raising a child with autism, and autistic children have speech difficulties. However, after training and learning, I overcame these difficulties. Thanks to God. (Fatima, an Emirati mother)

It’s hectic. You cannot work without consequences. You will not be supported by the workplace, as it is considered your personal life. It’s your challenge, and you should deal with it without your work being affected. You have no choice but to work. When I see my child, it pushes me to work hard. (Khawla, a Tunisian mother)

Satisfaction with services for children with disabilities

During the interviews, the Emirati mothers expressed high levels of satisfaction with the services provided to their children by social institutions, particularly those received from X institutions. Despite variations in the types of disabilities their children had, these mothers reported positive experiences with the care provided. One of them said, ‘All types of support are available at the centre, and the treatment is truly wonderful’ (Mariam, an Emirati mother). Another participant stated, ‘All services and facilities are available in the country. Praise be to God’ (Mahra, Emirati mother).

Some concerns were raised regarding the adequacy of the facilities provided in government schools. For example, one mother reported an incident in which a malfunctioning elevator at her daughter’s school was not promptly repaired, which resulted in the child being unable to attend school for several days (Maha, a Syrian mother). She also noted that some of the school’s laboratories were not equipped for students with disabilities.

The provision of free services to Emirati families by government institutions resulted in higher levels of satisfaction compared to the resident expatriates, who must rely on costly private facilities for their children. Nine expatriate mothers recounted that it was difficult for them to support their children. One of them expressed dissatisfaction and frustration with the services available to her (Dina, an Emirati mother with a Yemeni spouse). Her son was not eligible for a place at a government institution, and she found private facilities to be prohibitively expensive and mainly profit-driven. Despite both her and her husband being employed, they were unable to afford the treatment costs, which could amount to 120,000 Emirati dirhams (about 35,000 US dollars) per year. She explained that her son was currently at home without access to support services and that managing his care had become increasingly difficult due to recent episodes of anger, which posed a risk of physical harm to her and her other children.

Support needs of mothers

Responding to questions about the help needed to improve their quality of life as mothers of children with disabilities, eight expatriate participants indicated a need for financial assistance to cover the high cost of the equipment and ongoing specialist care required for their children. They also expressed a desire for comprehensive support programmes from institutions after the diagnosis. These programmes could include lectures, awareness initiatives, services and specialist centres for autistic children. Interestingly, these needs were also expressed by the Emirati mothers. The following interview excerpt summarises the experiences of the participants in this domain:.

I wish that institutions had comprehensive support programmes for mothers who discover that their children have disabilities, which could include providing lectures and awareness raising. Special services and centres that offer various beneficial activities to children with autism are available in foreign countries, such as Jordan and the UK. (Saeed, an Emirati mother)

Access to reasonably priced specialist care centres for expatriate children was also identified as a need, along with increased financial support for children of different nationalities. Finally, all the participants emphasised the importance of ongoing efforts (e.g. lectures and courses) aimed at combating the negative attitudes towards individuals with disabilities and promoting a better understanding of their needs in the community.

Discussion

This study investigated the experiences of working mothers raising children with disabilities in the UAE. Excerpts from the participants indicated that having a child with a disability was not seen as problematic. However, the accessibility and adequacy of the support system emerged as key factors influencing the participants’ experiences. Despite the initial shock of their children’s diagnoses, the participants appeared to have adapted well. The results showed that, regardless of nationality and background, the participants had similar experiences and coping strategies. Their initial responses to their children’s diagnoses were shock, depression and an inability to fathom how they would cope with supporting the development of children with disabilities. The reaction of the interviewees is not surprising, as a large body of research has found that parents experience depression, anger and surprise when their offspring are diagnosed with disabilities (Cheshire, Barlow, and Powell Citation2010; Crabtree Citation2007; Dogbe et al. Citation2022; Garip et al. Citation2017; Khooshab et al. Citation2016; Lamba et al. Citation2022; Opoku et al. Citation2020). Furthermore, both the Emirati and expatriate participants discussed the importance of faith in overcoming their negative feelings and embracing their children. The role of faith as a coping strategy for parents raising children with disabilities has also received some attention in the literature (Lamba et al. Citation2022; Opoku et al. Citation2020). This suggests that, when a child is diagnosed with a disability in the UAE, counsellors can draw on the parents’ faith in their provision of psychosocial support. This would facilitate the parents’ acceptance of the child and promote the rehabilitation support required by him or her.

The importance of social protection and support was evident in the responses of the participants. In this study, it was evident that accessibility to both sources of help differed between the two groups of participants. For instance, the Emirati parents benefited from both forms of support, while the expatriates received only social support. Also, the Emirati mothers seemed more content with the available services compared to the expatriate mothers. Formal and informal support in the raising of children with disabilities have been extensively investigated in the literature (Kyeremateng et al. Citation2019; Lee et al. Citation2014; Opoku et al. Citation2020). The governmental provision of social protection to the Emirati interviewees is understandable given the country’s population imbalance (a ratio of nationals to expatriates of 20:80). In this context, the government may intend to develop the capacities of its citizens while passing the responsibility for expatriates to their employers. Also, employers might not have much support in place to alleviate the caregiving burden of expatriates raising children with disabilities. This study has shown that working mothers are overburdened with responsibilities and are in dire need of financial help. The government could formulate guidelines for employers to offer some incentives to the above-mentioned expatriates.

Regarding the care arrangements made by the participants, an interesting result was that all Emirati mothers had ‘helpers’ at home to support their children and had informed their employers about their caregiving responsibilities to obtain flexible working hours. However, the expatriate mothers appeared to prefer selecting schools that were closer to their places of employment. This might be because the expatriate mothers were unable to negotiate with their employers flexible working hours that would allow them time to cater to the needs of their children and families. The evidence shows that this group of participants found it difficult to balance work and raising children with disabilities. Caring for such children has consistently been found to be demanding (Blackwell Citation2024; Cheshire, Barlow, and Powell Citation2010; Crabtree Citation2007; Lamba et al. Citation2022; Mbamba and Ndemole Citation2021; Niedbalski Citation2023; Okwan et al. Citation2023; Oti-Boadi, Oppong Asante, and Malm Citation2020a; Oti-Boadi, Dankyi, and Kwakye-Nuako Citation2020b; Singh, Shikarpurya, and Keese Citation2023); thus, adding work responsibilities can create an additional layer of burden for the mothers in question. This calls for the development of formal employment policy guidelines on how employers or supervisors may provide flexible working arrangements in this context. In most countries, including the UAE, anecdotal evidence suggests that nursing mothers are offered such arrangements to enable them to raise their newborns. Similar measures could be introduced for mothers of children with disabilities to help them balance work and care.

One area of agreement between the Emirati and expatriate mothers concerned the needs they expressed. While the former asked for appropriate rehabilitation services and awareness raising in society, the latter had a greater number of needs, including rehabilitation, financial and psychological support, and awareness creation. Previous studies have reported lapses in the services provided to parents and their children with disabilities (Lamba et al. Citation2022; Morgan Citation2023; Okwan et al. Citation2023; Oti-Boadi Citation2017), and a considerable number of suggestions have been made with regard to financial support, awareness raising and the provision of psychological support to these families (Blackwell Citation2024; Cheshire, Barlow, and Powell Citation2010; Lamba et al. Citation2022; Morgan Citation2023; Okwan et al. Citation2023; Oti-Boadi, Oppong Asante, and Malm Citation2020a; Sakkalou et al. Citation2018; Singh, Shikarpurya, and Keese Citation2023; Terra et al. Citation2011). Offering a one-size-fits-all service might not satisfy the requests of such families in the UAE. Although some efforts have been made to provide formal social protection to Emirati parents, the participants indicated that there is still room for improvement; this suggests that service provision in this domain can be ameliorated in the country. However, doing so requires an affirmative approach to tailoring services to the circumstances of Emirati families with children with disabilities. According to the social model of disability, there is a need for society to establish mechanisms to enhance the living conditions of children with disabilities and their families (Oliver Citation2013). In the UAE, this includes deliberately considering these families based on nationality and offering services that lessen their caregiving burdens.

Limitations

This study is not without limitations. First, the participants were recruited only from the Emirate of Abu Dhabi, so the findings might not be generalisable to the other emirates. However, similar structures and systems are in place in the rest of the country; thus, there is a possibility that the results reflect the experiences of the parents of children with disabilities living in the other emirates. Second, the study’s sample is not representative of all the mothers raising children with disabilities in the UAE. In particular, the study did not capture the voices of mothers whose children were out of school. A more representative sample is needed to verify the findings reported here. Third, as with all qualitative studies, there is a high risk of bias, as the participants could have been untruthful in their responses. This limitation was mitigated by developing rapport with the interviewees and conducting the study at a time of their convenience. The purpose of the research was explained to them, and confidentiality was assured. Therefore, it is likely that they shared accurate accounts of their experiences of raising children with disabilities. Still, an observational or longitudinal study could be conducted in the future to verify the findings presented here.

Conclusions and implications

The current study elucidated the intricate lived experiences and challenges of working mothers of children with disabilities. The findings revealed that both Emirati and expatriate mothers shared similar experiences in their initial reactions to their children’s diagnoses and the coping strategies they employed. Following the diagnoses, most participants reported a range of emotions, including shock, disbelief and depression, before ultimately accepting their children’s conditions and finding gratitude and contentment. Religious values were found to play a significant role in assisting mothers with coming to terms with their offspring’s disabilities. Another source of solace was the support they received from family members, particularly their husbands and the siblings of the children with disabilities. This support helped the mothers cope with balancing their personal and work lives, which seemed to be an extremely challenging task. However, a major difference in the sample concerned accessibility to social protection, as the Emiratis were offered state support, which was unavailable to the expatriate mothers. Nevertheless, both groups expressed similar needs, which could be considered by the government in formulating future social reforms.

It is evident that the caregiving experiences of participants are not solely defined by having a child with a disability. Rather, the quality of formal and informal support services significantly shapes their experiences. The commitment of the UAE government to promoting the well-being of children with disabilities is noteworthy (Gaad Citation2011, Citation2019). However, in an equitable society, consideration should be extended to all members of society. Specifically, there is a pressing need for an innovative approach to supporting expatriate mothers. Therefore, the government might consider providing guidelines to employers regarding the support that they could offer to mothers of children with disabilities, such as financial incentives and flexible working hours. Additionally, expatriate mothers could benefit from discounts to access public rehabilitation services for their children. Efforts should also be directed towards enhancing these services in the country, which could involve engaging parents in identifying gaps in current practices and improving services accordingly. As a result, children with disabilities and their mothers could fully enjoy their fundamental rights to social services in an equitable society.

Disclosure statement

No potential conflict of interest was reported by the author(s).

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