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Abstract

The current study provides a detailed description of the qualitative research design and methodology, used while exploring challenges and support structures experienced by expat mothers of children with Autism Spectrum Disorder (ASD) in the United Arab Emirates. In-depth, face-to-face, semi-structured interviews were administered with 17 mothers recruited using purposive and snowball sampling. Recurrent and relevant themes were generated using thematic analysis. Given there is a greater need for highlighting methodological rigor in qualitative research, we discuss steps such as a) using field knowledge to create an interview protocol, b) administering collaborative qualitative research, c) having strong eligibility criteria for participants, d) incorporating perspectives of multiple coders in the analytical process, e) being reflective and aware of one’s potential biases, f) enhancing interview protocol based on pilot interviews, g) and focusing on the quality of perspectives or information power instead of quantity of perspectives. Interpretation of findings and recommendation of evidence-informed guidelines incorporates strengths and limitations of the qualitative methodology utilized in the study.

Keywords

methods in qualitative inquiry qualitative evaluation mixed methods community based research interpretive description

Background

ASD is a developmental disability where children experience deficits in their social and communication skills, often combined with repetitive behaviors and other behavioral problems, making parenting extremely distressing (Kuhn & Carter, 2006). Parents of children with ASD face greater parenting stress (Hayes & Watson, 2013) and poorer family functioning than parents of children with other developmental disabilities (Al Khateeb et al., 2019; Cridland et al., 2014). Diagnosis is often delayed (Linnsand et al., 2021) and may lead to feelings of loss and failure as a parent (Ying et al., 2018). In addition, parents may also experience systemic challenges related to admissions to mainstream schools and streamlining therapeutic interventions.

Moreover, it has been noted that parents of children with ASD experience greater stress related to family functioning, parenting along with increased levels of financial stress when compared with typically developing children (Zeffane & Melhem, 2017). Mothers, often primary caregivers, experience greater psychological problems and often have to move away from their careers (Meadan et al., 2010; Riahi & Izadi–mazidi, 2012). Research further suggests that they lack support and may feel alienated from family and community (Solomon & Chung, 2012). Such issues often exasperate in expat or immigrant families, who must learn to navigate new social, cultural, and political structures.

Eighty-eight percent of the population in the UAE are expats (Edarabia, 2021). While the government prioritizes support for children with special needs (Federal Law No. 29), the advancements are relatively recent compared to several countries in the West (Borsay, 2012; Kim et al., 2019). Therefore, with its aim to facilitate support for citizens and residents in the UAE, the government encourages research examining the effectiveness of laws and policies regarding families and children with special needs (Sheikh, 2015). However, there is little information about, both personal and systemic, support structures and challenges experienced by caregivers of children with special needs, especially from a qualitative perspective (Hussein & Taha, 2013; Shahrokhi et al., 2021; Sheikh, 2015).

Overall factors such as a) lack of knowledge about experiences of expat parents of children with ASD, b) limited research in the field of inclusive and special education, c) call for identification of areas of advancement and development in the field, and most importantly, and d) lack of information on protective factors for expat mothers who are likely to experience psychological problems and high parenting stress – inspired this research in the UAE.

Theoretical Positioning

A family-systems theory acknowledges the uniqueness of a family as an interactive and reactive unit, consisting of its own norms and values. Hodgetts et al., (2013) mention that family systems theory extends beyond immediate family and includes support structures from environmental factors. In line with the present study’s context, previous research has shown that families with children with ASD experience high adjustment difficultiesCridland et al., 2014).

The experience of raising children with ASD depends on various support structures. Mothers with adequate social support have demonstrated to experience less stress and increased levels of optimism, leading to better family outcomes (Ekas et al., 2010; Zaidman-Zait et al., 2017). Additionally, a recent meta-analysis showed that positive sources of support, including parent-to-parent support, decreases symptoms of depression in mothers (Schiller et al., 2021).

Cridland and colleagues (2014) further report that internal as well as external support provides caregivers with the opportunity to convey experiences, share emotional difficulties and receive support. This support ranges from social support from other parents with children with Autism to problem-solving skills and strategies along with adequate health and medical support.

However, seeking support and relying on support structures could differ due to cultural and socio-economic differences. Moreover, external factors as geographical location and internal factors such as ethnicity or education could also significantly impact a family’s willingness to seek support services (Krakovich et al., 2016).

Overall lack of research in the field in the middle east, lack of information about experiences of expat mothers, and need for identifying challenges and support structures of families with children with ASD, inclusive of the pandemic related experiences, were primary research-based motivations of the authors.

The Present Study

Therefore, the primary aim is to explore experiences of support for expat mothers of children with ASD.

The aim of the study is to explore support structures and challenges experienced by expat mothers of children with ASD in the UAE (Lamba et al., 2022). The current article describes the rationale and methodology used to qualitatively analyze lived experiences of these mothers. Mothers shared their experiences of - parenting, help-seeking, diagnoses, schooling, support groups and community, in relation to their children’s ASD. The materials used were interview domains designed using previous research studies that explored similar domains. The findings of the study can be used on a psychosocial and policy level.

Explanation and Justification of Method

Design: Qualitative analysis of semi-structured interviews

We utilized a qualitative approach to enable an in-depth understanding of lived experiences of mothers with children with ASD. The qualitative methodology requires participants to reflect on their experiences, embraces subjectivity and meaning-making within a specific socio-cultural context, and establishes ‘truth’ by using intersubjectivity (Biggerstaff, 2012; Howitt & Cramer, 2010; (Lazard & McAvoy, 2020). A well-researched qualitative study focuses on ‘the understanding and explanation’ of the dynamics of social relations (Queirós et al., 2017). Based on this principle, the core values of this research are structured around social relationships and the interactions between them. The methodology also supported the larger aim of the study as qualitative research studies are increasingly being used to inform policy guidelines and systems decisions (Lewin & Glenton, 2018).

Qualitative research is often administered in a natural setting, and unlike quantitative research, the researchers actively engage in the generation and analysis of detailed textual data. There are many data sources such as interviews, diary entries, focus groups, and observations. We used in-depth, semi-structured, face-to-face interviews in the current study to collect data.

Sampling/Recruitment

Participants were recruited with a combination of purposive and snowball sampling. We defined the target group and established the inclusion criteria. The interviewer (AT), being a special needs educator in the region, had immense field knowledge and network, and initially approached two participants via email (purposive sampling). Afterwards, these two participants were requested to identify and approach mothers in their networks who would be willing and appropriate for the study (snowball sampling). Fifteen participants were successfully recruited using snowball sampling. They also approached a few prospective participants via social media. Phase 2 of the study was administered to explore participants’ experiences during the pandemic.

Both purposive and snowball samplings are non-probability sampling techniques commonly used in qualitative research (Verma, 2019). In particular, snowball sampling facilitates the collection of data from “hidden”, systematically marginalized, or vulnerable populations (Woodley & Lockard, 2016), this supported collection of data from otherwise ‘hard to reach’ participants in the current study.

Inclusion criteria

Key characteristics such as specific demographics and experienced-based attributes are often used in high-quality research to closely define the sample. In the current study, a strong eligibility criterion for participants facilitated a psychologically homogeneous sample (Robinson, 2014) and increased the internal and external validity of the research (Patino & Ferreira, 2018). Mothers who 1) had at least one child diagnosed with ASD, 2) were expats in the UAE, and 3) spoke basic communicative English were invited for participation. These characteristics were closely in line with the research objective. In particular, since expats or immigrants often have different challenges and support structures and may not have access to similar sources of information compared to individuals from the host cultures, we deemed it necessary to study their experiences separately.

Given the lack of similar previous research in the UAE, exploratory nature of the current study, and ‘hard to reach’ sample, we made sure that the inclusion criteria were not too restrictive but still facilitated external validity, greater homogeneity in the sample, and quality data collection (Golafshani, 2003).

Overall, 37 mothers were identified and approached for the study; however, 20 participants could not find time to participate, leading to a response rate of 46%. We anticipated a low response rate as mothers with children with ASD have extremely hectic schedules. It is possible that mothers who were extremely distressed could not find time to participate in the research. In addition, participants were not provided any incentives for participation. The final sample consisted of 17 mothers.

Qualitative researchers use a sample size that enables the creation of nuanced and insightful information (Biggerstaff, 2012). For the current study, a rather broad aim of the study, the feasibility of data collection, diversity of experiences shared by the participants, previous studies of similar designs, and choice of data analysis inspired the final sample size (Malterud et al., 2016; Onwuegbuzie & Leech, 2007a). Based on Onwuegbuzie and Leech (2007b) recommendation, we ensured that a) the sample size was not too large that it became difficult to extract rich and meaningful themes and that b) the sample size was not too small that it became difficult to reach data saturation and achieve information power (Malterud et al., 2016).

It is also important to note that we observed a saturation of ideas after approximately 10 interviews concerning experiences with spouses and support groups; however, participants continued to showcase the diversity of experiences and share unique anecdotes about systemic challenges such as diagnoses of their children and experience with teachers and schools. Therefore, we continued data collection and interviewed all the mothers who accepted our invitation. We believe that the final sample size of 17 participants is sufficient to report frequencies and qualitative insights using thematic analysis.

The end of the initial phase of data collection overlapped with the start of the pandemic. To explore the experiences of participants in the context of the COVID-19 pandemic, we emailed follow-up questions, exploring challenges and support structures during the pandemic, to all the participants. Seven participants sent detailed responses of their experiences, leading to a response rate of 41%. Again, the researchers expected a lower response rate during participants’ extremely busy schedules during the pandemic, however participants who responded to the questions offered detailed insights regarding their experiences. Therefore, despite a small sample size, a clear theme related to the pandemic emerged.

Other procedural insights

The interviews were administered in a private conference room of a hotel in Dubai. We wanted to ensure that participants felt comfortable in a secure and non-threatening environment. Open and noisy public spaces are discouraged for interviews of personal nature as they do not provide the participants with a ‘relaxed and safe’ environment that they may need to share their thoughts and feelings (Ecker, 2017; Elwood & Martin, 2000). The interviewer (AT) engaged them in informal conversations and ensured that the participants felt comfortable before starting the interview. The questions were communicated in simple spoken English as it was not the first language of several respondents. The interviews were conducted between March 2019 and August 2020 and ranged from 37 minutes to 110 minutes. At the end of each interview, participants were asked if they wanted to add anything that they felt might be relevant to the research. It allowed some participants to offer new information, which we may have missed during the interview.

After the first two interviews, NL and AT, re-evaluated the interviewer’s (AT) positionality in relation to the research topic and identified potential weaknesses in the interview protocol. This step, often underutilized in qualitative research (Sampson, 2004), allows for methodological adjustments, strengthens the interview protocol, and enhances the quality of the research (Malmqvist et al., 2019). In fact, during the pilot stage, the first two participants also helped improve the interview schedule by providing their inputs, supporting the integrated knowledge transmission model of research (Nguyen et al., 2020).

Given participants’ enthusiasm for increasing awareness related to autism and the interviewer’s personal and professional network as a special needs educator in the UAE, the findings will be disseminated in concerned schools and governmental institutions upon publishing.

Measures

We used semi-structured in-depth interviews to collect data as it provides opportunities for detailed probing and follow up questions. The interviewer (AT) included the participant’s non-verbal behavior and tone of voice into her field notes which were later incorporated into the coding process.

The interview schedule was created based on our readings of previous literature and discussion on key factors associated with lived experiences of expat mothers with children with ASD in the UAE (see Appendix A). The questions tapped into the challenges experienced and the support structures available to the participants. Each section contained approximately 4–5 questions, related to:

A. Diagnosis (e.g., What were some of the early signs that you picked up?)

B. School system (e.g., Does your child receive additional support services in the school?)

C. Therapeutic services (e.g., Do you feel that some therapy services are more essential than others?)

D. Support from family and other structures (e.g., What was your family’s reaction to the diagnosis of your child?),

E. Other life challenges (e.g., How do you prepare your child for new experiences?).

F. Experiences related to the pandemic (e.g., Please describe your experience of challenges of caregiving during the pandemic).

Participants were also asked to rate their satisfaction with diagnosis, schooling system, therapy, spouse, and support groups on a five-point rating scale ranging from 1 (very dissatisfied) to 5 (very satisfied).

Data Handling/Analysis

The audio recordings were transcribed verbatim, and the transcriptions were verified by the AT and NL.

Deciding on an Analytic Approach and Process of Analysis Chosen

The study adopted an inductive, bottom-up, data-driven approach to gain insight into participants’ lived experiences (Potter & Wetherell, 1987; Priya & Dalal, 2016). The interviews were transcribed and then analyzed using Thematic Analysis (Braun & Clarke, 2006) to identify repetitive patterns and themes in the textual data collected from mothers with children with ASD in the UAE. Thematic analysis was selected as it is a flexible approach, offers theoretical independence, and searches for themes that concisely describe the phenomenon studied and its relations to the social context (Terry et al., 2017). Braun and Clarke (2006) highlight the importance of a researcher’s judgment in identifying themes. We recognized a theme when it was repetitive and captured crucial points in relation to the research question. We included semantic and latent coding to incorporate explicit meanings such as frequent keywords and phrases and implicit meanings such as ideas within the coding process (Braun & Clarke, 2006). The data analysis involved a six-step process to ensure validity and reliability (Howitt & Cramer, 2010). The first step, familiarization with data, included getting familiar with the data by reading, repeated reading, and transcribing the data. The primary coder immersed herself in the data to ensure that they are familiar with the content. The second step included generation of initial codes relevant to the data.

We also calculated frequencies for each code to explain how many mothers experienced each phenomenon. We then categorized the codes into potential sub-themes. Clusters of sub-themes were identified as primary themes. We also generated a mind map (using simple post-its) with all the important codes and prospective primary and subthemes during this process. It helped us in visualizing all the themes as a team.

After that, we reviewed the themes. At this stage, we discarded codes that did not fit into any cluster of themes. It was an important step as we re-evaluated the importance of each theme in relation to the transcripts and the primary aim of the research study. We made sure that the final map truly reflected the data set (see Appendix B). It is important to note that during the process of analysis, we identified a few quotes that best explained participants’ experiences. This was an extremely important step for us as we wanted to showcase mothers’ feelings and concerns appropriately. The fifth step included naming all the sub-themes and primary themes using simple and self-explanatory terms. After that, we created a final thematic map. The final step included relating findings to literature and writing the report using frequencies and quotes.

Ethics

Information sheets were provided to the participants, highlighting the aims of the research study. Participants were asked for their consent before participating in the interviews. Interviewers were further informed about their rights as participants to withdraw at any point from the study. In summary, voluntary participation through consent was sought to also maintain the authenticity of the data collected.

Participants were also assured of anonymity and confidentiality. Interview transcripts although recorded were anonymized through pseudonyms and only anonymized excerpts were used for publication. Direct or indirect identifiers were additionally removed when necessary. Moreover, if the data related to a particular category of a participant reveals information about the wider group that is considerably sensitive, those transcripts were condensed to maintain confidentiality.

As noted in literature, discussing struggles and experiences in relation to parenting a child with ASD can cause significant distress to parents due to the sensitivity of the subject. Participants were informed of how they were allowed to take breaks during the interview or refuse to answer a question asked. Furthermore, if participants did exhibit distress the interviewer would give the participants the time and space to feel better, enquire if they would like to proceed. If the participant expressed their concern and did not want to continue, the interviewer would conclude the formal interview, thank the participant for their time and provide debriefing information.

Dissemination

The findings from the study will only be used for academic purposes which include journal articles, conference presentations, and policy recommendations/proposals. The findings will be disseminated via summaries presented through infographics and power-point presentations. The key study findings will be summarized and presented to groups of educators, mental health professionals, parents, and caregivers in the United Arab Emirates.

These plans may be amended based on feedback from research advisories. Most importantly, interviewer’s (AT) network as a special needs teacher in the UAE, is being utilized to further create awareness in the public via discourse and policy recommendations. Therefore, the authors (AT and NL) have created a workshop for parents of children with ASD, teacher assistants, and shadow teachers in the UAE, to highlight some of the concerns raised by mothers in the current study.

Rigor

We followed Lincoln and Guba’s (1985) criteria of dependability, transferability, credibility and confirmability as essential factors to ensure rigor in a qualitative study. Protocols were developed for collecting data, refining proposed methods and analysis of findings. They explained that credibility of a study is determined when researchers or readers are confronted with the experience and when they recognize it. To ensure there was credibility in the current study, we engaged in multiple activities such as persistently observing the data collected, prolonged engagement with the data to familiarize ourselves with it, and lastly triangulating data with existing literature as well as researcher triangulation where two researchers attempted to analyze results and compare findings.

To maintain trustworthiness, we maintained reflexivity and rigor throughout the research process (Barrett et al., 2020; Barry et al., 1999). Dependability was another factor that researchers engaged in to ensure the research protocol was traceable, clearly documented, and logical. Additionally, reflexivity is central to the audit trail, therefore the primary researcher kept a self-critical account of the research process including their external and internal dialogue, daily logistics, rationales as well as methodological decisions and personal reflections of their values, insights and interests (Sandelowski, 1986)

To ensure transferability of the maintenance, analysis was designed in a manner that ensured generalizability. Thick descriptions were provided for themes that emerged so that future researchers can attempt to replicate the study protocol. Lastly, confirmability refers to the fact that the researcher’s interpretation of the findings is clearly derived from data. Tobin & Begley, (2004) suggest that confirmability is usually met when credibility, transferability and dependability are achieved. Therefore, these processes were included for theoretical, analytical and methodological choices throughout the study to ensure others understood why and how decisions were made.

Sandelowski, (1986) mentions that a study and its findings are auditable when another researcher can clearly follow the decision trail made by the primary investigator. Therefore, 30 percent of the interviews (n = 5) were selected using a random number generator in excel and were coded by a second coder (NL). The inter-class correlation coefficient (average measure) was 0.7. Coding disagreements were then discussed to reach a mutual agreement. Themes were cross-checked by both coders (AT and NL), a process that systematically enhanced the “truth value”, credibility, and overall trustworthiness of findings (Lincoln & Guba, 1985).

Lastly, peer scrutiny and debriefing were utilized, by reaching out to peers. The fresh perspective provided, helped the primary researchers to challenge earlier assumptions. Debriefing sessions amongst the researchers also took place to decrease researchers’ bias.

Discussion

We explored support structures and challenges of expat mothers with children with ASD in the UAE (Lamba et al., 2022). Mothers’ retrospective narrative suggests that they felt dissatisfied with medical professionals and extremely stressed during the process of diagnosis. Several mothers felt that either their child/ren was misdiagnosed, or the diagnosis was delayed. It was often delayed as symptoms of ASD could be confused with symptoms of comorbid impairments such as delayed language development. Mothers also narrated initial struggles of finding an appropriate school or therapeutic interventions for their child/ren with ASD. Given the mothers are expats, it is possible that initially, access to information related to interventions was scattered and unclear. Perhaps limited inclusive staff across schools and healthcare settings in the region posed a systemic challenge, leading to often switching between healthcare professionals and schools, further increasing their financial and emotional stress. However, most reported feeling satisfied with therapy at the time of the interview.

Approximately half of the sample was not satisfied with the support they received from husbands. While most appreciated financial support, they wished for more emotional and instrumental support. Mothers also felt alienated from the community at large, and a few narrated experiences of negative comments or behaviors from family members such as grandparents and neurotypical siblings. Qualitative insights suggest that such experiences, unfortunately, perpetuate the feeling of feeling and staying ‘invisible’ in society.

Importantly, mothers felt extremely satisfied with support groups. Mothers shared their common experiences, empathized with each other, and exchanged key information regarding school admissions and therapeutic support. Previous research has shown that such experiences of belongingness facilitate self-efficacy, effective coping, and overall psychological well-being of participants (Ekas et al., 2010; Zhang et al., 2015). In addition, seven mothers shared their experiences with children with ASD during the pandemic. Children with ASD thrive on routine and predictability, however, uncertainty interrupted schooling and therapy, and lack of routine during the pandemic exacerbated the situation and contributed to violent and disruptive behaviors.

While answers related to the pandemic were rich and insightful, only seven mothers responded to follow-up questions related to the pandemic. It is also important to note that qualitative research does not necessarily include a highly representative sample and lacks the power of generalizability. The findings, however, showcase information power within the social context of the research. Steps described enhancing methodological rigor of the current study contributed to greater validity and trustworthiness in the findings.

Supplemental Material

Supplemental Material - Unpacking Qualitative Methodology to Explore Experiences of Mothers with Children with Autism Spectrum Disorder in the UAE: A Thematic Analysis Inquiry

Supplemental Material forUnpacking Qualitative Methodology to Explore Experiences of Mothers with Children with Autism Spectrum Disorder in the UAE: A Thematic Analysis Inquiry by Nishtha Lamba, Angelique Van Tonder, and Archana Raghavan in International Journal of Qualitative Methods

Footnotes

Acknowledgments

The authors would like to thank all the mothers for their time and informing research practice in this field.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Middlesex University Dubai. The interviewer’s time and travel, was compensated with the funding received from the University.

ORCID iD

Nishtha Lamba

Supplemental Material

Supplemental material for this article is available online.

Appendix

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