Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa

Abstract

Most autism research has been conducted in high-income countries, with participants typically from White, upper-middle-income families. Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds to understand their unique needs. Qualitative research has the potential to describe the ‘lived experience’ of families historically underrepresented in the autism literature. Here we describe the logistical and methodological challenges of conducting focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. Logistical challenges included (1) recruitment, (2) response rate, and (3) resource access. Methodological challenges included (1) participant background and experiences, (2) interpersonal dynamics, and (3) research ethics. We present recommendations based on lessons learned to reduce these challenges and improve rigorous qualitative research practices in similar low-resource contexts.

Introduction

An estimated 95% of autistic individuals live in low-and middle-income countries (LMICs) and have extremely limited access to services and supports (Franz et al., 2017; Lord et al., 2021; Olusanya et al., 2018; WHO, 2011). While there has been increased interest over the last decade in autism research in low-resource contexts, the overwhelming majority of research still occurs in high-income countries, typically with participants from White, upper-middle-income families who already receive autism-related services (e.g., Elsabbagh et al., 2012; Lord et al., 2021; de Vries, 2016). Autism research to date is, therefore, not globally representative because it has largely omitted culturally, linguistically, and socioeconomically diverse individuals and their families (e.g., Carr & Lord, 2016; de Vries, 2016). For example, a recent estimate suggested that 1% of autism research has been conducted in sub-Saharan Africa (Franz et al., 2017). This is a troubling statistic because, along with South Asia, sub-Saharan Africa has seen the most significant increase in rates of developmental disabilities in the past few decades (Olusanya et al., 2018). Therefore, widespread geographic disparities exist in the literature relevant to diverse autistic individuals.

This underrepresentation matters because it results in disparities in identification and service utilization (e.g., Zeleke et al., 2019). For example, Non-Hispanic White children in the USA are 20% more likely to receive an autism diagnosis than African American children and 50% more likely to receive a diagnosis than Hispanic/Latinx children (Baio et al., 2018). Disparities are also documented in access to autism services for children from culturally, linguistically, and socioeconomically diverse backgrounds (e.g., Zuckerman et al., 2017; Smith et al., 2020). There is a need for research on disparities that impact autistic individuals living in settings least represented in the evidence base. For example, research has begun to document disparities and barriers to care for autistic children living in LMICs, such as South Africa, a multicultural, multilingual nation impacted by significant income inequality (Britz & Mason, 2020; Cardon & Marshall, 2021; Franz et al., 2017; Franz et al., 2018; Gona et al., 2016; Mthombeni & Nwoye, 2018; Pillay et al., 2021; Pillay et al., 2022; Springer et al., 2013). It is critical that more efforts are directed toward conducting high-quality research tailored to and inclusive of underrepresented communities (e.g., Aligato et al., 2021; Jakobsen, 2012; Scheelbeek et al., 2020).

To address research gaps and improve the quality of care and service access in sub-Saharan Africa, a collaboration was initiated between researchers and clinicians at the University of Cape Town in South Africa and Duke University in the USA in 2015. The long-term goal of this collaborative effort was to adapt and implement a non-specialist delivered caregiver coaching naturalistic developmental behavioral intervention for young autistic children, adapted to the South African context, and integrated into an existing care system. As an initial step towards this longterm goal, with institutional pilot funding, a research assistant from the USA joined the South African team during a summer internship to jointly conduct focus group discussions (FGDs) with caregivers of young autistic children for the team to understand caregiver perceptions of contextual factors that would impact adaptation of a caregiver coaching intervention.

Qualitative research is an important methodology because it can describe the ‘lived experience’ of families historically underrepresented in autism literature by bringing together a small group of participants to discuss specific questions (Cyr, 2017). While some qualitative researchers may argue that individual interviews are better suited for marginalized groups, such as those impacted by disabilities, FGDs generate data from individuals with complementary experiences through conversation and ‘brainstorming,’ with multiple participants answering questions and reacting to one another through a dynamic social dialogue (e.g., Willis et al., 2009). This technique or method elicits contextual ideas that might be missed by only utilizing individual interviews. If the purpose of research is to generate discussion about contextual experiences and beliefs, FGDs may be an appropriate approach. FGDs have been used in several autism studies with individuals living in low-resource African contexts, and this reporting style may fit with collectivist cultures that have more inter-dependent self-concepts (e.g., Britz & Mason, 2020; Cardon & Marshall, 2021; Gona et al., 2016; Hofstede et al., 2005; Mthombeni & Nwoye, 2018).

This manuscript outlines the logistical and methodological challenges we encountered when conducting FGDs at the beginning of our research journey in Cape Town, South Africa, in 2015. While international collaborations are common in medical research, they are nascent in neurodevelopmental research, particularly in autism research in LMICs. Therefore, we outline the challenges we encountered to share lessons learned for research teams in LMICs and other low-resource settings who are beginning their collaborative autism research efforts. In this manuscript, we specifically aim to a) describe challenges experienced when conducting FGDs with a highly diverse sample of caregivers of young autistic children in Cape Town, South Africa, and b) provide recommendations based on the lessons learned that may decrease logistical and methodological challenges when conducting autism research that includes FGDs in culturally, socioeconomically and linguistically diverse contexts in the future.

Methods

Study Context

This study was conducted in Cape Town, South Africa. Although the Western Cape Province, where Cape Town is located, is one of the country’s better-resourced regions, most autistic children live in poverty, are impacted by income inequality, and have limited access to services and support (Mayosi & Benatar, 2014; The World Bank, 2019). While very few South African studies have explicitly reported on autism-related health disparities, differences in child expressive language abilities were documented in a Western Cape neurodevelopmental clinic, where 94% of Black children were non-verbal at diagnosis compared to 42% of White children (Springer et al., 2013). The process of receiving an autism diagnosis in the Western Cape typically begins with children being brought to community clinics for routine check-ups or because of caregiver developmental concerns. Providers identify symptoms that trigger a referral to a tertiary neurodevelopmental clinic for diagnostic assessment (Pillay et al., 2021). This referral process can take 9-18 months to complete. After a child receives a diagnosis, they may be referred for therapy and placed on the Western Cape Education Department Provincial Autism Waiting List for special education services. A 276% increase was reported in the number of children on this waiting list between 2012 to 2016 (Pillay et al., 2021; Pillay et al., 2022). While the overall prevalence of autism in South Africa, like other countries in Africa, is unknown, a recent study by Pillay et al. (2022) found a rate of 0.01% of autistic children in the Western Cape Provincial school system (counts included children in school and on the provincial autism waiting list). Within this sample of children diagnosed with autism, significant racial and linguistic disparities were reported compared to regional demographics, with a higher number of children coming from White, English-speaking backgrounds than expected in the province. Findings from this study demonstrated a 76% increase in the number of autistic children in the school system between 2012 and 2016 but largely suggested a gross under-identification within Western Cape schools (Pillay et al., 2022).

Participants

This manuscript is a secondary analysis of qualitative research conducted in Cape Town, South Africa (see Guler et al., 2018; Ramseur et al., 2019). In 2015, at the beginning of a University of Cape Town-Duke University research collaboration, we conducted FGDs with caregivers of young autistic children to understand caregiver perceptions of contextual factors that may impact the adaptation of a caregiver coaching intervention. We recruited 22 caregivers of young autistic children through convenience sampling from the Western Cape Provincial Autism Waiting List. Inclusion criteria included: (1) being a caregiver of a child diagnosed with autism aged seven years or younger and (2) being willing to participate in data collection. We focused on the caregivers of children seven and younger because this research program’s long-term goal was to adapt and implement an early intervention. In addition, while a formal education is compulsory for all children in South Africa (including children with disabilities) between the ages of seven and fifteen years, there are no such service provisions for younger children, suggesting that focusing on this younger age group may bridge a critical service access gap (South Africa Department of Education, 2001).

The US research assistant contacted potential participants via telephone for recruitment, with support from South African team members as needed. If the caregiver agreed to participate, an appointment date was provided. Basic demographic data were collected, including caregiver sex, race/ethnicity, caregiver role, and child sex (See Table 1). During the facilitation of the FGDs, caregivers also reported on their cultural, linguistic, and socioeconomic backgrounds and their child’s access to autism-related services. These were all queried topics of discussion as part of the FGD question guide.

Table 1.

Participant demographics

	N=22
Sex of caregiver (n, %)
Male	4 (18)
Female	18 (82)
Race/ethnicity (n, %)
Coloreda	10 (45)
Black African	8 (36)
White	2 (9)
Asian/Indian	2 (9)
Caregiver role (n, %)
Father	4 (18)
Mother	16 (73)
Grandmother	2 (9)
Sex of autistic child (n, %)
Male	16 (89)
Female	2 (11)

^aColored is a South African ethnic category for individuals with mixed ethnic heritage.

During this initial research phase, data were collected from caregivers of young autistic children who had completed pilot caregiver coaching sessions and providers and policymakers in various service delivery sectors, utilizing an in-depth interview technique or method (see Franz et al., 2018). While the broader project used both FGD and in-depth interview techniques, this manuscript focuses on challenges and lessons learned from conducting the FGDs with caregiver participants in the study.

While members of the autism community were not explicitly involved in the design and implementation of the qualitative study described in this manuscript, it is relevant to note that this study was not a single standalone project but rather occurred at the onset of a stakeholder-engaged research program with local communities in South Africa (see Franz et al., 2018). Data collected for this initial qualitative study were utilized to directly inform the design and implementation of intervention research employed to serve local communities. In addition, the challenges which arose provided valuable lessons about the process of systematically collecting data from members of the autism community in a low-resource global context.

Study Design

Human research ethical review boards approved all study procedures of the primary study at the University of Cape Town and Duke University. Before starting the FGDs, all research participants completed informed consent, and the research team answered questions regarding research participation. Participants were reimbursed for travel and received ZAR100 as compensation for their time. FGDs were video and audio recorded. Video recordings assisted in producing an accurate verbatim transcription of participant comments during large group discussions. Four FGDs were conducted and ranged in size from 2 to 10 participants. Each FGD was held in a small private observation room and ranged from 1 to 3.5 hours in length. The FGDs were facilitated using six question stems focusing on a range of salient topics, including (1) caregiver perceptions of and goals for their child; (2) service utilization and experiences; (3) caregiver-child daily interactions; (4) attitudes towards and acceptability and feasibility of caregiver coaching; (5) contextual factors to consider in coaching; (6) acceptability of local video clips/photographs as coaching materials. See Appendix A for the question guide developed and used for the present study.

The research team consisted of mental health and neurodevelopmental specialists and researchers from South Africa and the USA. Three members of the research team, including two skilled South African clinical psychologists with previous qualitative research experience and clinical expertise working with autistic children, conducted the FGDs with the assistance of a graduate research assistant from the USA with experience and training in qualitative research methods. At least one of the two South African clinical psychologists led each FGD. One FGD was conducted almost exclusively in isiZulu. The other three FGDs were conducted primarily in English; however, participants occasionally made comments in isiXhosa or Afrikaans, which were simultaneously interpreted into English by multilingual FGD facilitators.

Data Analysis

The purpose of this manuscript was to describe logistical and methodological challenges and lessons learned while conducting FGDs with diverse caregivers of young autistic children in South Africa. Three research team members who facilitated the FGDs held post-FGD reflection meetings after completing each group (NS, NS, and JG). An additional full-day team meeting was held with the three team members who conducted the FGDs and the two research team members who served as lead investigators of the study (PJdV and LF) after data collection. During team meetings, the research assistant (JG) systematically compiled an aggregate list of barriers experienced during data collection to be later discussed in research team meetings. We employed applied thematic analysis (ATA; Guest et al., 2011) to identify and describe themes to create our codebook. ATA consists of analyzing written text to identify specific details that create thematic categories.

Two research team members conducted this thematic analysis (JG and LF). Each independently reviewed the factors included on the study’s data collection barriers list and grouped them into hierarchical thematic categories of logistical and methodological challenges. Each factor was then broken down to inductively label derivative meanings of the theme, which were defined as sub-themes. Finally, the reviewers met to discuss their sorting to reach a shared consensus. The coding of the data set was then cross-examined with video recordings of the study’s FGDs by a separate member of the authorship team (KAS). This author was not a member of the original field research team. She guided the ATA for this article and provided topical expertise regarding qualitative research methods and research ethics. Seven key themes of logistical and methodological challenges were identified, each with corresponding sub-themes within the data set. Our data analysis concluded with the composition of summaries describing each of the key themes and sub-themes. No formal inter-coder reliability analysis was conducted on the data; however, we performed additional qualitative assurance checks with all original research team members (PJdV, NS, and NS) to review the study results and ensure the accuracy of the presented interpretations.

Results

Findings will be presented in two parts. First, we describe logistical challenges, and second, we describe methodological challenges encountered while conducting FGDs. Figure 1 illustrates logistical and methodological challenges and their corresponding subthemes.

Figure 1 –

Summary of thematic results

Logistical Challenges

Recruitment

Participant recruitment was a logistical challenge due to (a) language barriers, (b) challenges contacting participants, and (c) participants who had previous experiences working with members of the research team. South Africa is linguistically diverse, with 11 official languages. While many South Africans are multilingual, fluency in different languages varies. South African team members were available if needed, but the research assistant who led project coordination and recruitment efforts was a monolingual American-English speaker. She used the Provincial Autism Waiting List for recruitment. Information about language proficiencies or preferences was not readily available from this list. Thus, linguistic barriers arose. Some caregivers reported confusion about understanding the research assistant. While FGDs were conducted in participants’ preferred language by a fluent speaker on the research team, the recruitment process may have limited linguistic heterogeneity in the final sample.

Some barriers arose during recruitment due to mobile phone service and text messaging. South Africa’s data costs are high relative to income. Thus, although mobile phone numbers were updated regularly on the Waiting List, many phone numbers at recruitment were no longer operational. We found caregiver phones were turned off, phone numbers had changed, or caregivers shared phones with neighbors to reduce costs. In addition, several caregivers opted to correspond through text messaging to reduce data costs.

Given the limited access to autism intervention in Cape Town, some participants were familiar with South African team members who co-facilitated FGDs. These team members were some of the few providers in the province with specialized training in autism intervention and provided pro bono services. During recruitment and FGDs, several caregivers described previous experiences working with these team members. When familiarity with team members was identified during recruitment, caregivers were assigned to FGDs where that team member was not present.

Response Rate

Participant response rate represented challenges, including (a) number of respondents, (b) delayed arrival time, and (c) unexpected additional respondents. While research conducted in low-resource contexts frequently denotes limitations regarding low response rate (e.g., Fredrickson et al., 2005), we experienced the opposite. The number of respondents was larger than expected for each FGD. Some caregivers who previously stated they were unavailable or uninterested in participating during recruitment attended FGDs. Others brought friends who had an autistic child to FGDs. We accommodated all attendees on the day of data collection as each attendee individually met inclusion criteria. However, the unexpected response rate resulted in the need to facilitate concurrent FGDs. We interpreted the unexpected high response rate as being indicative of the high interest of caregivers to engage in research that may support their autistic child (i.e., re-arranging their schedules to attend FGDs) and as enthusiasm to inform other caregivers about such opportunities (i.e., “word of mouth” snowball sampling). Both points were self-reported to members of the research team by study participants.

All participants were provided an appointment time for FGDs. Despite this, caregivers arrived 20-80 minutes late. Several caregivers commented that their delays were due to traveling by bus or walking, while others stated they did not think their appointment time was “fixed.” Delayed arrival led to some caregivers joining FGDs late or waiting until the research team could facilitate another FGD. While the original plan was to hold one FGD on a given day, two concurrent FGDs had to be facilitated unexpectedly due to response size and arrival times. As a result, we conducted one additional FGD with participants who had arrived ~80 minutes late.

Another challenge was additional family members attending FGDs. Several caregivers brought family members, noting that these individuals had unique experiences caring for their child and wished to have emotional support from a family member to speak about their child’s difficulties. All caregivers who came to an FGD were accommodated as each met the study inclusion criteria. Thus, some caregivers were familiar with one another, which may have influenced their comfort (positively or negatively) about talking about their personal experiences in the presence of others. However, we made efforts to separate caregivers for the same child into different FGDs.

Resource Access

Access to specific resources provided challenges, including (a) access to childcare, (b) technology/equipment, and (c) power cuts. FGDs occurred on weekends to accommodate caregiver and research team schedules. During recruitment, caregivers were told that childcare would not be provided. However, several caregivers brought their autistic children to FGDs. Caregivers reported they did not have “safe” or “willing” childcare and wanted the research team to “meet” and “observe” their child. Children had to be in the room during FGDs because no adults could provide supervision outside of the room. This resulted in disruptions (e.g., children crying, children climbing on participants). All children brought to FGDs were reported by their caregivers to be autistic.

All FGDs were conducted in clinical observation rooms with two-way mirrors and audio-video recording equipment. However, after the FGD, it was discovered that there were technical challenges. Because of the size and lively nature of the group, including movement and late arrivals, several participants were out of the video frame, which made it impossible to transcribe their comments and statements with participant-specific descriptors (which can allow for the ability to analyze qualitative comments made by participants in correspondence with categorical groupings, e.g., participants coming from different racial or socioeconomic backgrounds). Regarding the audio recordings, it was difficult to transcribe comments made by participants who spoke softly or when multiple caregivers spoke simultaneously. The research team had one backup handheld audio recorder. However, due to the unexpected response rate, separate FGDs were held concurrently. Thus, the handheld audio recorder could only be used in one FGD at a time. All audio and video recordings were carefully reviewed multiple times to ensure accuracy in verbatim transcription, and “inaudible” data were marked in transcripts where appropriate.

There were several periods of power cuts during FGDs. South Africa has periods of government-mandated “load shedding” (i.e., regional loss of electrical power). As a result, the research team experienced difficulties running computers in observation rooms and making copies of consent forms and visual aids. In addition, several participants reported that power cuts impacted their ability to arrive on time for their FGD.

Methodological Challenges

Participant Experiences and Beliefs

Differences in participant experiences and beliefs posed challenges, including diversity in (a) autism diagnostic journeys and beliefs and (b) autism-related services and knowledge. Caregivers presented variability in their experiences of obtaining their child’s autism diagnosis. Inclusion criteria did not stipulate the length of time since diagnosis. Therefore, FGDs included caregivers whose children had recently received a diagnosis and ones who had received a diagnosis several years earlier. In addition, caregivers presented with a range of beliefs, knowledge, and opinions regarding the etiology, symptoms, and prognosis of autism. For example, several caregivers reported their children were “cursed.” Others questioned whether a “cure” was available. We made efforts to facilitate an inclusive and non-judgmental atmosphere that encouraged caregivers to share varied perspectives. Notably, this diversity in caregiver experience is an inherent strength of conducting FGDs and was beneficial to enhancing data quality; however, it elicited methodological challenges related to the facilitation complexity.

Similarly, caregivers demonstrated variability in experiences and knowledge related to autism services. All caregivers lived in Cape Town, where intervention options were limited, like most places in Africa. Some caregivers had little to no access to services. Therefore, we explained the types of services provided to young autistic children (e.g., ABA, occupational therapy). Other caregivers had experience in the private sector and reported negative experiences with specific providers and high costs. Some caregivers shared referral recommendations or discussed “rumors” about autism services (e.g., a “rumor” that non-verbal children could no longer access public education). While caregivers sharing their diverse experiences and knowledge was encouraged by FGD facilitators, these diverse experiences enhanced the data set quality, resulting in facilitation challenges.

Interpersonal Dynamics

Interpersonal dynamics posed challenges in terms of (a) participant diversity, (b) participant-led discussions, and (c) the development of a “caregiver support group” dynamic. Caregivers were linguistically, culturally, and socioeconomically diverse. Although this diversity supported the collection of rich data, it also created challenges. While three FGDs were facilitated primarily in English, on numerous occasions, participants used words, phrases, or slang in Afrikaans and isiXhosa. FGDs were co-facilitated by multilingual South African psychologists who could speak and interpret these languages in vivo during FGDs. There was also diversity in participant communication styles, and discussions sometimes became very lively and active, with many participants talking over each other and introducing individual topics of interest. In the isiZulu FGD, participants became quieter when facilitators joined the FGD from different racial and linguistic backgrounds. On several occasions, participants noted negative feelings about resource limitations compared to other participants. FGDs were facilitated as non-intrusively as possible so participants would share their experiences and perspectives without feeling there was a “right or wrong” answer to the questions asked. Efforts were made to encourage active participation, and facilitators emphasized the importance of diverse perspectives, including prompting and providing positive reinforcement for the views of quieter participants and validating the participants’ emotions when expressed.

There were several instances in which participant-led discussions were challenging. At times caregivers would speak amongst themselves during FGDs, discuss anecdotal stories unrelated to FGD topics, or attempt to “lead” or “co-facilitate” the discussion. At that time, dynamics within the group would become loud, warranting additional facilitation techniques. Additionally, there were several instances where caregivers engaged in participant-led discussions resulting in brief conflicts between caregivers. FGD facilitators worked to direct discussion with open-ended questions and a non-judgmental approach while attending to the comments participants raised.

Another methodological challenge was the development of a “caregiver support group” dynamic. During each FGD, there were instances when the discussion would shift to a “support group” dynamic (e.g., caregivers exchanging contact information, adding one another on social media, scheduling playdates, or emotionally consoling one another). Several times, participants referred to the FGDs as “free therapy” or “parent-to-parent information sharing.” After completing the longest FGD (~3.5 hours), numerous caregivers remained in the room for an extended period, hugging, talking, and sharing photos of their children. Study participants were not discouraged from engaging with one another as both parties were interested and willing. Thus, the social support which arose amongst caregivers was viewed as an unexpected positive outcome of the FGDs.

Research Ethics

Challenges around research ethics included (a) informed consent, (b) confidentiality, and (c) participant expectations and needs for services. During recruitment and informed consent, we explained the study objective. Most participants had no prior research participation experience. Thus, there were numerous instances in which study participants reported misunderstandings related to the research process. Several caregivers stated that they did not want to sign the consent document during the informed consent process but wanted to sit in the FGD to “learn from other parents” because they didn’t feel they had any information to contribute. The research team described how all caregivers’ experiences and perspectives were valued and carefully reviewed the ethics of research participation. All caregivers ultimately decided to participate voluntarily. Informed consent was conducted in participants’ preferred language by a fluent speaker on the research team.

Participant confidentiality must be carefully considered when conducting FGDs since FGDs collect data from multiple participants in group settings. The limits of confidentiality were discussed with participants during consent and at the beginning of the FGD. However, some caregivers who participated in this study engaged directly with other participants more personally during and after the FGD (e.g., exchanging contact information). These exchanges happened spontaneously and at participants’ discretion.

Participant expectations and the need for services were a salient methodological challenge related to research ethics. From the research team’s perspective, the purpose of the FGDs was clear and reviewed with caregivers at length during recruitment and consent. However, there appeared to be a mismatch in expectations between researchers and some participants. On arrival, several caregivers stated they were there to attend “parent training” or an “autism workshop.” During the FGDs, caregivers actively sought education about autism and parenting advice from facilitators and other participants (e.g., exchanging phone numbers with other caregivers for local therapists, sharing parenting advice learned from a YouTube video). Many caregivers reported little to no access to autism-related services and the desire to access intervention services with the research team. Several brought their autistic child to FGDs so they could be “assessed” to receive “intervention.” During FGDs, caregivers also expressed interest in learning how data would be used to develop a new intervention program. They noted wanting to enroll their child in the program immediately after the FGDs. We made efforts to explain the intervention development process and clarify how their contributions would help develop an early intervention over time. A few caregivers reported disappointment that their child would “not get the chance” to participate in the intervention or concerns that their child would “age out”. However, many of the same caregivers noted feeling hopeful and proud they could help another family by sharing their child’s story, noting that participating meant they were “part of something bigger than themselves” and could help “make a difference.” Taken together, these salient examples highlight how caregivers who participated in the study had a range of expectations and needs which were not met through research participation alone.

Discussion

The present study aimed to describe challenges experienced when conducting FGDs with diverse caregivers of young autistic children in Cape Town, South Africa, and provide recommendations based on lessons learned. FGDs were conducted in 2015, at the beginning of a long-term collaborative effort to implement contextually adapted, non-specialist delivered caregiver coaching in South Africa. The logistical and methodological challenges experienced directly informed the design and implementation of our ongoing research program.

Most autism research does not adequately include diverse perspectives. This underrepresentation limits our understanding of the ‘lived experience’ of most autistic individuals globally and impacts the validity of assessment tools and intervention approaches (e.g., Lord et al., 2021). FGDs are an adaptable and informative data collection approach, allowing researchers to simultaneously collect in-depth contextual information from several participants in an open-ended format. However, research techniques or methods may need to be refined to develop an inclusive research approach applicable in diverse and low-resource contexts.

Lessons Learned and Recommendations for FGDs in Low-Resource Culturally and Linguistically Diverse Contexts

To increase research representation, there is a need to be responsive to contextual factors impacting study participants. This could include simple logistical accommodations such as scheduling multiple FGDs on the same day with different start times for late arrivals. Procedural accommodations, including additional steps to ensure participant understanding of research procedures, could align researcher and participant expectations and needs. In addition, the critical importance of accommodating participant language preferences cannot be understated. Capacity-building efforts that prioritize the career development of culturally and linguistically diverse researchers that reflect the researched communities, including autistic researchers, would help in this effort and support further development of contextually appropriate and relevant data collection approaches (e.g., Mmogo-Method™).

Below we summarize specific recommendations for autism research that utilizes FGDs in low resource, culturally, and linguistically diverse contexts, based on lessons learned at the genesis of our research journey, including international collaboration (see Table 2).

Table 2.

Recommendations based on lessons learned

Thematic Challenge	Recommendations for Conducting Research in Low-Resource Culturally and Linguistically Diverse Contexts
Recruitment	• Screen participants in advance of FGD regarding (a) the time since child’s ASD diagnosis, (b) current access to ASD services, and (c) prior experience with members of the research team • Use text message and in-person recruitment strategies to ensure participants are not excluded from recruitment because they do not have phone calling capabilities • Collect participant language preferences and level of language competency in advance of FGDs • Conduct recruitment in the preferred language of participants to ensure their understanding of the research project
Response Rate	• Embrace community interest in inviting other eligible participants to attend FGDs • Prepare to accommodate fluctuating response size of participants • Prepare multiple private spaces to accommodate additional participants • Plan to assign caregivers of the same child to different FGDs • Prepare a waiting area and offer refreshments for other guests who accompany participants to FGDs • Schedule multiple FGDs on the same day at different times to accommodate late arrivals
Resource Access	• Provide free on-site childcare with experienced staff • Have backup audio recording equipment available • Structure space so that all participants are “in frame” of video recording even when participants move around in the room • Use microphones to audio record participants during FGD to ensure soft voices can be heard and transcribed • Print additional copies of documents needed for data collection so to not rely on electricity if there are outages
Participant Background and Experiences	• Use FGD facilitation techniques to respond appropriately to varying caregiver perspectives • Use FGD facilitation techniques to engage caregivers with little to no knowledge of autism or prior experiences with autism related services
Interpersonal Dynamics	• Consider assigning caregivers to FGDs based on their language preference, socioeconomic, and cultural/ethnic background • Prioritize research capacity building efforts that ensure linguistic diversity of researchers matches the community • Use FGD facilitation techniques to redirect FGD topics to specific focus of research inquiry when appropriate • Use FGD facilitation techniques to respond appropriately to caregivers who express emotion or upset during FGD • Assign facilitator to FGDs to promote participant comfort (e.g., matching facilitator based on language/cultural background) • Consider use of context specific data collection methods (for e.g., Mmogo method)
Research Ethics	• Address questions about limits of participant confidentiality prior to FGD initiation • Review FGD procedures at beginning of FGD • Prepare a visual outline of the topics that will be covered during FGD • Consider working with IRB to develop a comprehensive oral consent procedure that would allow participants to complete their informed consent orally if their level of literacy is very low • Ask participants to “teach-back” study procedures during informed consent to ensure they have gained understanding of the research process and the risks and benefits of participating in research • Provide referral information after FGDs to connect participants to local resources (e.g., caregiver support network) • Provide psychoeducation session about autism after FGD • Provide caregivers with free, contextually appropriate autism resources for varying literacy levels (e.g., books, videos) • Provide caregiver education on stages of the intervention development at onset of FGD

When conducting research in low-resource contexts, consider providing some degree of service to meet participant expectations and needs. This may include psychoeducation sessions, caregiver training workshops, or information on free online resources. Researchers must ensure participants understand research procedures, particularly when they have no prior research participation experience. “Teach-back” methods with oral informed consent may help ensure greater participant understanding of the research process and help align participant and researcher expectations. There is a value in being responsive to factors that impact participants’ ability to participate in research. Offering free childcare with experienced staff may decrease significant study participation barriers. Researchers need to understand contextual and cultural factors impacting communities included in FGDs. These factors may inform more appropriate approaches to recruitment, data collection, and FGD study techniques or methods. Text messaging and snowball sampling techniques, for example, maybe some contextually appropriate recruitment strategies. Incorporating locally developed qualitative research techniques or methods, such as the Mmogo-Method™, an Afrocentric data qualitative collection method, may improve the fit between participants and the research approach (Roos, 2008).

Recommendations offered by the present analysis are not a statement that previous research with diverse caregivers in low-resource contexts is flawed or invalid. Instead, we acknowledge unique challenges in implementing all research studies that are frequently not reported. As interest in autism research in low-resource, diverse contexts grows and international collaborations that support these efforts begin, we hope others may generate additional recommendations to establish best practices for conducting autism research in LMICs and low-resource contexts within high-income countries.

Limitations of Study

There are several limitations of the present manuscript. Firstly, we acknowledge that individual interview techniques or methods may better suit the study population because the stigma associated with disabilities may impact caregiver comfort and willingness to disclose information in an FGD format. However, the dynamics that emerged in the FGDs (i.e., active, lively, “caregiver support group”) and the extended FGD duration (up to ~3.5 hours in length) suggest that this technique or method may have been engaging for participants and appropriate to understand the lived experiences of South African caregivers. Secondly, we acknowledge that some of the recommendations may be context-specific to the setting of the present study. However, similar challenges would likely be encountered in high-income countries, particularly those marked by income inequality and health disparities. Thirdly, because FGDs were conducted in 2015, there might be some differences in logistical and methodological challenges if the FGDs were completed at a different time point. However, minimal access to early intervention in South Africa and racialized income inequality persists (Statistics in South Africa, 2019). Therefore, it is likely that most of the challenges reported in this manuscript will persist. Fourth, limited data were collected regarding several demographic characteristics of participants within the study sample (e.g., caregiver age, socioeconomic status, educational attainment level, linguistic background). While caregiver sex, race/ethnicity, caregiver role, and child sex were collected, additional demographic information would have been beneficial to know early in the participant recruitment process to inform the composition and facilitation of FGDs and during data analysis to interpret the study findings. Fifth, while this qualitative study was conducted at the onset of a stakeholder-engaged intervention research program, we acknowledge that members of the autism community were not engaged in our work at this stage of our research journey. We recognize the critical importance of the longitudinal engagement of various stakeholders in autism research. For example, including South African caregivers of young autistic children and autistic self-advocates as research team members from the inception of this qualitative study may have pre-empted some of the logistical and methodological challenges encountered. Finally, researcher positionality and the influence of power imbalances between researchers and participants must be continuously reflected upon throughout the research process. All research team members came from highly educated and higher socioeconomic backgrounds; however, members of the research team differed in relation to their race, ethnicity, nationality, and linguistic backgrounds. We can never fully know how researcher or participant identities influenced the data collected for this study; however, we seek to recognize this limitation so readers of various identities can bring their conclusions to bear on our findings and continue to work to improve methodological best practices for autism research in the future.

Conclusion

Given the disparities experienced by autistic individuals living in underserved communities globally, there is a critical need for research to include individuals from culturally, linguistically, socioeconomically, and geographically diverse backgrounds, which employ methodologically rigorous and contextually responsive approaches. To meet this end, dialogue must continue to be provoked to discuss lessons learned by research teams working with diverse communities of autistic individuals living in low-resource settings. We hope we have contributed to these discussion topics regarding the logistical and methodological lessons we learned and the corresponding recommendations generated to establish best practices for conducting autism research in LMICs and low-resource contexts within high-income countries.

Appendix A. Focus Group Question Guide

1. Please can you describe your child for us [Parental Perception/Values]

   1. What is most important to you about your child’s growth?
   2. What are your short-term goals for your child?
   3. What are your long-term goals for your child?
2. Does your child use any services for their autism? [Values/Experiences/Services]

   1. What types of services does your child use?
   2. What do you like or not like about these services?
   3. What types of services would you like your child to receive?
   4. What would the “best” autism service look like?
   5. How useful are services for children with autism when they are very young?
3. We are interested in finding out more about how you play with your child. [Parent-child play]

   1. Do you play with your child?
   2. Are there other adults besides you that play with your child?
   3. Can you tell us about the games you or other adults play with your child?
   4. How do you know your child is having fun when you play with them?
4. What would you think about being taught how to do therapy with your child? [Attitude/Acceptability – parent mediated techniques]

   1. Would you be interested in learning how to do this type of therapy with your child?
   2. What do you think would be easy about learning how to do this therapy with your child?
   3. What do you think would be hard about learning how to do this therapy with your child?
   4. What would you think about someone coming into your home to teach you how to do this with your child?
5. Do you think the following things would be important when making an autism treatment for families in South Africa? [Contextual Factors]

   1. Culture
   2. Language
   3. Where you get the treatment
   4. Cost of the treatment
   5. Who teaches you (for e.g. speech therapist or occupational therapist or community health worker)
   6. How you already parent your child
   7. How much time it takes to learn
   8. How much support you have from your partner or other family members
   9. Proof that the treatment works
   10. How the treatment fits with your family needs

6. How do you feel about the use of video clips or photographs from local families who have helped us in our research? Is it useful or not useful? Appropriate or not appropriate?

7. Is there anything we missed?