Despite the global presence of autism spectrum disorder (ASD), a paucity of treatment services exists in Tanzania and other low- and middle-income countries. The effect of delayed or low-quality treatments is enduring and contributes to lifelong variability in ASD-related functional impairments. Service disparities in Tanzania derive in part from a widespread lack of national ASD knowledge. Historically, in Western countries, parents have played a major role in increasing ASD awareness, advancing research, and encouraging empirically supported treatments. In the absence of established treatment services, parents of children with ASD have also learned to implement behavioral interventions to reduce the widening skills gaps. This article describes the development of an intervention designed to inform parents in Tanzania about ASD and empirically supported behavioral strategies. Preliminary data, collected from a clinical implementation with 29 Tanzanian families of children diagnosed with ASD or general developmental delays, support the initial feasibility and acceptability of this intervention. This brief intervention may help to ameliorate treatment disparities due to insufficient regional knowledge, language barriers, or limited service availability and may help improve functional outcomes among Tanzanian children with ASD.
Global epidemiological studies of autism spectrum disorder (ASD) reveal two important findings: (a) Identification of children with ASD continues to increase around the world, suggesting the effect of ASD on families is a growing global concern; and (b) there are still regions of the world, such as Africa, where ASD is largely understudied (Elsabbagh et al., 2012). A primary challenge in examining the prevalence and impact of disorders such as ASD in low- and middle-income countries (as defined by the World Health Organization, 2013, based on national income per capita) is the lack of regional knowledge of ASD (Elsabbagh et al., 2012). Limited knowledge of mental health in many low- and middle-income countries often leads to diminished availability of treatment services for mental illness in general (Collins et al., 2011; Patel, Araya, Chatterjee, Chisholm, & Cohen, 2007; Saxena, Thornicroft, Knapp, & Whiteford, 2007) and even more so for ASD (Khan et al., 2012). Research is needed to examine methods for improving the global disparities that arise for people with ASD due to this relative lack of knowledge and unavailability of empirically supported treatment options in low- and middle-income countries.
Insight into how to remedy this problem may be gained by examining countries defined as low income, such as the United Republic of Tanzania. This country in sub-Saharan Eastern Africa has a population of approximately 40 million people (Winks, 2009). Mounting evidence supports the presence of ASD in Tanzania (e.g., Harrison, Zimak, Sheinkopf, Manji, & Morrow, 2014; Manji & Hogan, 2014; Mankoski et al., 2006); however, no known research has attempted to quantify ASD estimates in much of Africa, including Tanzania, leaving prevalence estimates a mystery (Elsabbagh et al., 2012). Accurate examinations of prevalence estimates are hindered by a wide range of barriers, including low regional knowledge of ASD, which prevents accurate reporting of occurrence rates. These similar barriers also affect the provision of sufficient assessment and treatment services in low-income countries, such as Tanzania.
Although poverty is one factor underlying limited resources for many children and adults with developmental disorders such as ASD in Tanzania, national service structure limitations also contribute substantially to disparities in ASD assessment and treatment. Only 65% of Tanzanians graduate from primary school and 5% from secondary school, limiting the pool of Tanzanian citizens pursuing training in medicine and higher education related to psychological disorders (Winks, 2009). This shortage is reflected by statistics suggesting that in sub-Saharan Africa there is less than one psychiatrist for every million people (Omigbodun, 2008). The existence of so few regional psychologists and psychiatrists restricts the ability to disseminate treatment and assessment services (Manji & Hogan, 2014). Further, despite some demonstrated progress in Tanzania toward improving the availability of ASD diagnostic assessment services (e.g., Harrison et al., 2014; Mankoski et al., 2006), there is an overwhelming lack of translated and validated assessment instruments and treatment protocols (Manji & Hogan, 2014). Once diagnosed, people with ASD have few opportunities to receive treatment. For example, the Ministry of Education reports only 8 public and 15–20 private schools registered for educating children with ASD in the country of Tanzania (Manji & Hogan, 2014). In sum, this service-delivery system provides people diagnosed with ASD with finite access to sufficient diagnostic, educational, and treatment services (Manji & Hogan, 2014).
In addition to inadequate service infrastructure, limited regional ASD knowledge also contributes to difficulties in disseminating treatment and assessment services in Tanzania. Knowledge of and attitudes toward mental health can affect treatment quality, as well as treatment seeking and use of services (P. Leaf et al., 1985). This is especially true for countries like Tanzania, where parents of mentally ill children indicate that stigmas and lack of public awareness are primary social challenges (Ambikile & Outwater, 2012) and where there are reportedly low levels of ASD-specific knowledge among the general public, primary health care workers, and educators (Manji & Hogan, 2014). Low regional knowledge of ASD in Tanzania results in insufficiently trained teachers, often even at schools registered to teach children with ASD, and limited numbers of professionals qualified to accurately diagnose and treat ASD (Manji & Hogan, 2014).
Given the role that diminished knowledge and stigmas play in proliferating treatment disparities, increased regional ASD knowledge in countries like Tanzania is an important first step toward decreasing these documented disparities. Organizations, such as Autism Speaks, have launched important initiatives to increase global awareness of ASD by providing countrywide infrastructure (Wallace et al., 2012), but little research has examined methods for adapting more basic intervention approaches for distinct groups within low- and middle-income countries. In support of this approach, interventions to increase mental health literacy for different forms of psychopathology (e.g., depression), have demonstrated that interventions tailored to specific target populations often have increased effectiveness (Kelly, Jorm, & Wright, 2007). If applied to ASD, this approach could be a promising avenue to increase ASD knowledge in low- and middle-income countries, such as Tanzania.
Countries with low levels of ASD knowledge might initially benefit from interventions specifically tailored to provide knowledge to parents of children with ASD to serve as a primary advocacy base. In many Western countries, parents of children with ASD have historically served as important advocates for improving regional knowledge and advancing ASD research and clinical services (Silverman & Brosco, 2007). In Tanzania, parent advocates involved in the National Association of Parents with Autism in Tanzania (NAPAT) have already taken steps toward improving the quality of education for children with ASD in Tanzania (Manji & Hogan, 2014). Interventions to more widely disseminate accurate knowledge of ASD and basic behavioral treatment principles to parents could help to bolster these efforts. Parents of children with ASD might be the key to providing behavioral interventions for children in countries without existing service infrastructure (Warren et al., 2011). By increasing parent knowledge of ASD and behavioral strategies (e.g., learning to use positive reinforcement to increase positive behavior), we can help to not only establish an informed advocacy group but also to begin to train parents to serve as primary therapeutic support systems for children with ASD in the absence of national specialized ASD services.
Given emerging evidence of an overall low level of ASD knowledge in Tanzania (Manji & Hogan, 2014), increasing regional knowledge of the symptoms, etiology, and empirically supported treatments for ASD emerges as a top intervention priority. Therefore, we will describe the development and pilot implementation of a knowledge intervention tailored specifically for caregivers of children with ASD in Tanzania. Caregivers are a promising target for knowledge interventions because of their high motivation to learn about the disorder and historical success in other nations with parents serving as advocates for systemic change (Silverman & Brosco, 2007). In light of the limited availability of treatment services in Tanzania for people with ASD, the current intervention combined information about ASD generally with behavioral treatment strategies. Due to limited ASD-aware regional care providers, the intervention incorporated interpreters and multiple modalities of instruction to increase the feasibility of teaching caregivers about ASD despite language barriers. The objectives of this article are to (a) describe the intervention development process, (b) outline initial feasibility and acceptability data collected from a pilot trial in Tanzania, and (c) discuss future directions and applications.
Participating families originated from a range of Tanzanian cities, including Moshi, Arusha, Mwanza, and Dar Es Salaam. Given that the primary goal of the project was clinical service, and not research, this sample was obtained through a typical clinical referral process by which families bringing their child for a diagnostic evaluation at one of two clinic locations (Moshi and Dar Es Salaam) were invited to participate in one of the two intervention phases (described in detail in the next sections) following the diagnostic evaluation. These diagnostic clinics have been running for several weeks each summer as part of a volunteer effort to increase ASD services in Tanzania. Parents of children with noted developmental delays were informed about the clinics by local Tanzanian service providers and were invited to bring their child in for a diagnostic evaluation free of charge (for more details about the assessment clinics, see Harrison et al., 2014).
The average age of children presenting at the clinics was approximately 7 years old (Table 1); and for most of the children, this was their first diagnostic evaluation. This reflects a significant delay in diagnostic evaluation services in Tanzania compared to the 5.7 year average diagnostic age observed in high income countries, such as the United States (Shattuck et al., 2009). Most children had received no special education or clinical services (Table 1). On average, participating caregivers attained a level of education higher than the majority of Tanzanians, who generally complete primary school (National Bureau of Statistics, 2010).
Intervention development and pilot implementation occurred in two phases (Phases I and II). All families presenting at the diagnostic service oriented clinics were invited to participate in the intervention, regardless of their child's diagnostic status (i.e., ASD vs. global developmental delay). In both phases, caregivers received the intervention directly following their child's ASD evaluation. Although ideally the caregiver intervention would occur in multiple sessions to allow for more in-depth instruction (for a review, see Oono, Honey, & McConachie, 2013), the context in Tanzania did not allow for this arrangement. Many parents traveled from far distances to attend the clinic (i.e., 500 km from home, or more for some families) given the infrequent occurrence of opportunities for diagnostic evaluations in Tanzania. Offering the caregiver intervention in one session following the diagnostic evaluation increased the likelihood of caregivers' receiving any intervention by removing the barrier of asking families to travel back to the clinic in the future to participate.
Given the limited number of child psychologists and mental health professionals with ASD expertise in Tanzania, the intervention was delivered by pairing Swahili interpreters with an English-speaking treatment provider with a Ph.D. in Clinical Psychology and with extensive training in working with families and children with ASD. Interpreters had experience working with children. Interpretation was provided in a consecutive style (i.e., the clinician spoke first and then paused to give the interpreter a chance to provide the information in Swahili). The Swahili interpreters asked caregivers in which language (Swahili or English) they would prefer to conduct the interview. Regardless of parent choice, the interpreter remained present for all assessments to address language barriers.
To our knowledge, no known ASD interventions have been adapted for use in Tanzania. The goal of Phase I was to pilot the ASD-knowledge intervention and to conduct a needs assessment to identify the highest priority behavioral strategies to include in the final knowledge intervention. The needs assessment ensured that rather than implementing a preexisting parent intervention that emphasized topics potentially irrelevant in Tanzania, the intervention modules included in the resulting intervention matched the specific needs of Tanzanian families. Different strategies for practically presenting information to Tanzanian parents were also piloted in this phase (e.g., verbal didactics presented via an interpreter and examiner modeling). Based on information collected from Tanzanian caregivers in Phase I, a list of behavioral modules was generated. Phase II was designed to refine the general ASD knowledge module, solidify the behavioral target topics, and design and pilot additional methods of instruction (e.g., pairing verbal didactics with pictorial handouts that incorporated simple instructions presented in Swahili and English).
In both Phases I and II, caregivers first completed a brief, semi-structured intake interview designed to collect demographic data and assess specific parental concerns and developmental milestones. The structure of this interview was derived from a clinical early childhood intake questionnaire, but it was condensed and altered to increase cultural relevance (Harrison et al., 2014). To evaluate parent perceptions of the areas of highest need and to collaboratively identify treatment goals, caregivers were asked the open-ended question: “What are your primary concerns for your child?” Areas of greatest parental concern were noted and used to inform the behavioral intervention modules developed in Phase I. In Phase II, this assessment guided the specific modules presented to each family.
The intake interview also provided information about family demographics. Family education and socioeconomic status are reported, based on the highest in the household (see Table 1). The Hollingshead Scale was used to convert parental occupations to a numerical range of zero to nine, with nine reflecting the highest rating of occupational status (Hollingshead, 1975; see Table 1).
Malawi Development Assessment Tool
In Phases I and II, an interview version of the Malawi Development Assessment Tool (MDAT; Gladstone et al., 2008) was administered to provide an estimate of child adaptive functioning and to help identify areas of relative strengths and weaknesses. The MDAT was created to assess adaptive behavior among inhabitants of rural Africa in the domains of socialization, language, and daily living skills and has established excellent reliability and validity (Gladstone et al., 2010). This measure was normed for use in Malawi; therefore, it was used in Tanzania to qualitatively assess acquisition of common developmental milestones (e.g., progress with toilet training, age of first word/sentence). The MDAT data were combined with the parent interview data to serve as a needs assessment in Phase I and to inform individual tailoring of the intervention in Phase II (see following details).
Phase I: Needs Assessment and Intervention Development
Phase I Method
Phase I participants
Twelve caregivers of 14 children participated in Phase I (see Table 1 for demographic details). Caregivers included eight biological parents, one adult sibling, two uncles/aunts, and one adoptive guardian. According to MDAT scores, all children demonstrated significant delays in adaptive functioning across domains; therefore, all families served to benefit from learning behavioral strategies for improving adaptive behavior.
Phase I procedure
In Phase I, the parent session consisted of two parts: (a) a needs assessment to identify areas to target in future knowledge intervention sessions, including modules in more specific behavioral strategies, and (b) a brief ASD knowledge intervention. The needs assessment occurred throughout the course of the intake interview and adaptive assessment (MDAT) portions of the evaluation by documenting the areas of need most frequently identified by caregivers. The caregiver-identified and clinician-observed areas of need from Phase I were documented and used to inform the development of Phase II of the intervention (see “Phase II Procedure” section).
The ASD knowledge intervention was piloted in Phase I. This intervention component included pairing verbal didactics via an interpreter with a handout in Swahili containing information about the symptoms, etiology, and treatment options for ASD. The handout was a general summary of ASD developed by a group of people from Connects Autism Tanzania and local health professionals knowledgeable about both Tanzanian culture and ASD.
Phase I Results and Intervention Development
Data collected from parents in Phase I suggested that modules should focus on basic behavioral strategies targeting early developmental milestones commonly impaired among children with delays. For example, caregivers often requested assistance with improving their child's self-help skills (e.g., feeding and toileting) and language abilities. Parents reported that these life skills were particularly important, since a general minimum level of adaptive functioning (i.e., independent toileting) is often necessary for attending Tanzanian public schools. Further, nonverbal communication delays observed among presenting children (e.g., impaired eye-contact, limited use of communicative gestures, low imitation ability) also emerged as priority areas.
A review of the general parenting literature (e.g., Forehand, Merchant, Long, & Garai, 2010) and of previous ASD parent-trainings (e.g., Crockett, Fleming, Doepke, & Stevens, 2007; Johnson et al., 2007; Whittingham, Sofronoff, Sheffield, & Sanders, 2009) was combined with the needs assessment data collected in Phase I to inform behavioral strategies to target. The intervention developed focused on providing information in three areas: (a) General Parent Training, (b) Teaching Basic Skills, and (c) Teaching Self-Help Skills. Within these three domains, nine behavioral modules and one module on ASD knowledge were offered (see Table 2 for a detailed list of modules). For each module, commonly used behavior principles were broken down into simple steps to increase the feasibility of instruction. Similar to the development of interventions used in high income nations (e.g., Johnson et al., 2007), the modules were based on the knowledge of two psychologists with expertise in using behavioral strategies for children with ASD and a literature review of commonly used curriculum development references. For example, guidelines for using reinforcement strategies and giving directions were derived from R. Leaf and McEachin (1999), a text designed to help develop behavior management curricula. Similarly, the steps presented in the modules for toilet training and feeding were also developed from this text (R. Leaf & McEachin, 1999) and paired with appropriate visual prompts to create handouts (e.g., see Figure 1). Guidelines for collaborative goal setting and steps for increasing language were formulated from Ingersoll and Dvortcsak (2009). The ASD knowledge intervention was expanded to provide parents with additional information about ASD.
The ASD parent training literature documents multiple methods for teaching parents behavioral strategies, with an emphasis on combining different levels of instruction (e.g., first providing didactics and modeling the described behavior, and then encouraging parents to be more interactive through role play; Crockett et al., 2007). The current intervention adopted this multifaceted instructional approach with four modalities of instruction: (a) verbal didactics, (b) pictorial handouts with accompanying Swahili text (translated by Tanzanian mental health professionals), (c) therapist-modeling and coaching, and (d) therapist–guided parent practice with feedback. Given the brevity of the intervention, the addition of the handout as an instructional modality provided caregivers with more tangible documents to take home and refer to following the intervention. This step is important given the limited access to computers and Internet resources in the country (Mtebe & Raisamo, 2014).
Phase II: Pilot Implementation
Phase II Method
Phase II participants
Twenty-nine Tanzanian caregivers of 33 children (three of the participating families had more than one child assessed) diagnosed with ASD or another developmental disability participated in the brief, parent-based behavioral intervention (see Table 1 for participant descriptives). Six of these caregivers also participated in Phase I of the study. Parent (n = 29) demographics reflect a heterogeneous group of caregivers participating in the intervention. Although 66% of caregivers were biological mothers (n = 19), the intervention was also provided to three biological fathers, three older siblings, one uncle, two grandparents, and one private tutor. Family demographic data are reported in Table 1. Children had either a diagnosis of ASD (n = 19) or a global delay (n = 8). No meaningful differences were observed between the two diagnostic groups in terms of general demographics (e.g., age, gender, education level, or parent characteristics). According to MDAT scores, children across both diagnostic groups demonstrated significant delays in adaptive functioning across domains.
Phase II procedure
The primary goal of Phase II was to expand the knowledge intervention offered in Phase I to provide a more comprehensive and standardized intervention informing families about a range of behavioral strategies. Parents completed interviews and questionnaires to gather demographic information, to inform the tailoring of the intervention, and to assess the feasibility and acceptability of the intervention. All appointment times were approximately the same length due to the constraints of the clinic schedule. Given the individualized nature of the assessment and the intervention (which took longer for some families to complete) some caregivers took more time to finish research assessments at the end of the session, resulting in some variability in completion of assessment measures.
The same knowledge intervention presented in Phase I was implemented with caregivers in Phase II in a single session following the ASD diagnostic assessment. The session lasted approximately 1 hour. In addition to the ASD knowledge module, families could receive up to nine behavioral modules across domains of (a) General Parent Training, (b) Teaching Basic Skills, and (c) Teaching Self-Help Skills (see Table 2). Target modules for each family were selected based on parent report during the intake interview and the MDAT, as well as on clinician observation. The goal was to tailor each family's modules to align with the most pressing concerns their child was facing. For example, caregivers of children demonstrating minimal nonverbal communication might receive a lesson in methods for increasing communicative gestures, whereas a family with a child who was exhibiting primary challenges with learning self-help skills might participate in a lesson in how to use picture schedules to break complex tasks into smaller components for increased mastery. Caregivers could encounter between one and 10 modules depending on identified needs and feasibility (e.g., time constraints). Only families with a child diagnosed with ASD were offered the ASD knowledge module. Phase II employed a combination of instructional modalities. Verbal didactics were first delivered to families by a clinician via an interpreter (English to Swahili) with the addition of a pictorial handout. Next, to further overcome challenges associated with a language barrier, clinicians demonstrated each behavioral strategy to families. Caregiver role-play and practice was encouraged as time allowed.
Phase II measures
Autism knowledge assessment
In Phase II, parental knowledge of the etiology, symptoms, and treatment options for ASD (i.e., ASD mental health literacy; Jorm, 2012) was qualitatively assessed by asking caregivers two questions: (a) “Have you ever heard of autism?” and (b) “What do you know about autism?” Caregiver responses to these questions served as a baseline level of parental ASD-specific mental health literacy, which was used to guide the approach to presenting the ASD knowledge component of the intervention.
Feasibility: Treatment checklist
A treatment checklist was used to track the number and content of modules presented to each family. This information allowed for the assessment of whether the intervention could be administered as intended in the time allotted and to examine group differences in the number of modules administered across child diagnostic groups (i.e., ASD versus developmental delay) and testing sites. We also used the checklist to track which of the four instruction modalities (verbal didactics, pictorial handouts, clinician modeling, and parent practice and clinician feedback) were used to present each module to caregivers.
Acceptability: Modified Therapy Attitude Inventory
A subset of caregivers (n = 8) participating in Phase II who had additional time following the assessment and the intervention also completed a modified version of the Therapy Attitude Inventory (Eyberg, 1974) to assess the acceptability of the intervention. Caregivers completed four Likert-style questions evaluating how helpful and acceptable they found the intervention on a scale from 1 (dissatisfied) to 5 (extremely satisfied). Caregivers also responded to four open-ended questions providing feedback on the intervention content, including the following: (a) How could the intervention be improved? (b) What additional topics should be included? (c) What were the most helpful aspects of the intervention? and (d) What were the least helpful aspects of the intervention?
Phase II Results
In support of the feasibility of implementing this intervention among families of children with ASD in Tanzania, all 29 of the eligible caregivers who were invited to participate in the intervention agreed and received an individualized subset of the various components of the behavioral intervention. All of the caregivers of children with ASD (except one, who was highly knowledgeable about ASD) also received the autism knowledge component of the intervention. The brief assessment of autism mental health literacy revealed that 36% of participating families had never heard of ASD, 24% had heard the term ASD and could provide several words or phrases describing ASD but had minimal other information (e.g., affects brain, learning challenges, regression), and 40% had at least a working knowledge of ASD and could discuss the symptoms of the disorder with some fluency.
Caregivers received a unique subset of behavioral modules in alignment with parent-requested needs and clinician-observed areas of child impairment. Each family received one to seven of the ten modules with an average of four modules per family (M = 4.16, SD = 1.53). Behavioral modules delivered most frequently to Tanzanian caregivers included “Using Reinforcement Strategies” (82%), “Teaching Requesting” (67%), and “Increasing Eye Contact” (61%) (see Table 2). Using independent sample t-tests, we identified no group differences in number of modules presented to families of children with ASD and families of children with global delays, t(26) = .82, p = .42, thus indicating that the range of intervention modules were relevant for both diagnostic groups. Similarly, no significant group differences were observed in the number of modules introduced to families across the two clinic sites [Moshi and Dar Es Salaam; t(26) = 1.73, p = .10].
To reduce the effect of the language barrier, the English-speaking clinician employed multiple instructional modalities to present the intervention to caregivers. There was some variability with regard to the number of modalities used depending on available time for the intervention. Table 2 shows the percentage of families receiving each modality level. All families received verbal didactics via interpreters when necessary, as well as Swahili handouts with visuals depicting behavioral strategies. Although the goal was to allow families to participate in all four modalities of instruction, this proved challenging given the allotted time. A large proportion (69%) of families also received clinician modeling, and 7% of families practiced the strategies in the session while receiving clinician feedback.
Despite the cultural, language, and logistical barriers in conducting the clinic, all but one of the 33 participating caregivers reported that the intervention was beneficial (97%). The outlying reporter cited a need for additional, more comprehensive training. Caregivers also provided feedback regarding the specific content areas included in the intervention. In addition to the 10 modules offered, multiple caregivers requested the addition of several other modules, including the following: (a) managing negative behavior, (b) improving sleep, (c) decreasing food selectivity, and (d) increasing complex language.
Of the small sample of caregivers that completed the Therapy Attitude Inventory, both quantitative and qualitative feedback was overwhelmingly positive. The overall mean of all questions on the Therapy Attitude Inventory was 4.78 out 5 (scores on individual items are presented in Table 3). Responses to open-ended questions were coded using an inductive thematic content analysis by two coders, and coder disagreements were resolved through verbal discussion until reaching 100% agreement (Patton, 2002). See Table 3 for coded qualitative themes.
There is a great need for improving knowledge of ASD in Tanzania, a country where ASD assessment and treatment opportunities are currently extremely limited and where regional stigmas and insufficient knowledge result in increased disparities for families of children with ASD (Ambikile & Outwater, 2012; Manji & Hogan, 2014). We discuss the development and pilot implementation in Tanzania of an intervention designed to educate Tanzanian caregivers about ASD and to teach behavioral strategies for improving child adaptive functioning. The protocol described here is innovative in its approach to addressing global ASD knowledge disparities due to the combination of instruction on general ASD knowledge and on practical behavioral strategies identified by Tanzanian caregivers as pertinent within the Tanzanian cultural context. Additionally, the protocol employs multiple instructional modalities designed to minimize language barriers (e.g., pictorial handouts and clinician modeling). This is particularly important in areas such as Tanzania with low numbers of local, Swahili-speaking psychologists and psychiatrists (Manji & Hogan, 2014; Omigbodun, 2008) because it allows non-Swahili-speaking professionals to provide information about ASD to families. Finally, this approach is novel because of the emphasis on informing caregivers. Given the important role that parents have played in moving the field of ASD forward in many Western nations (Silverman & Brosco, 2007), improving ASD-specific mental health literacy among parents and caregivers of children of ASD in Tanzania may be an important first step in helping to reduce disparities. Although not the emphasis of the current intervention, knowledgeable parents can serve as important advocates of change as has been historically observed in many Western countries (Silverman & Brosco, 2007). By providing parents with knowledge about ASD, they can start to help by disseminating awareness and reducing prominent regional stigmas in Tanzania.
Although broad awareness campaigns and policy change must predate a systemic availability of services, more basic efforts to improve regional knowledge now can improve outcomes for children with ASD in Tanzania. ASD knowledge interventions have been implemented in other African countries (e.g., Ethiopia; Hoekstra et al., 2014), but this is the first known intervention implemented in Tanzania. As such, an examination of feasibility and acceptability was important to help identify specific aspects of the intervention relevant within the Tanzanian cultural context. Results from this pilot implementation provide promising initial feasibility and acceptability data supporting this knowledge intervention for non-English-speaking caregivers of children with ASD in Tanzania. More specifically, we learned that several of the intervention modules were especially important for Tanzanian caregivers, including “Using Reinforcement Strategies,” “Teaching Requesting,” and “Increasing Eye Contact.” The particular relevance of these modules may reflect cultural variability in behavioral practices. For example, given the cultural acceptance and pervasive use of corporal punishment as a primary strategy for child modifying behavior in Tanzania (Frankenberg, Holmqvist, & Rubenson, 2010), strategies such as positive reinforcement are less widely acknowledged and therefore, may emerge as a systematically novel concept for Tanzanian caregivers and an important knowledge intervention target especially for people with developmental delays. The high relevance of instruction in nonverbal behaviors (requesting and eye contact) may be attributable to research demonstrating cross-cultural variability in nonverbal communication (e.g., McCarthy, Lee, Itakura, & Muir, 2006). For example, research shows Tanzanians tend to use a low-context communication style, which relies more on explicit and direct language (Ngai, 2000). These types of cross-cultural differences may lead to less caregiver familiarity and emphasis on instruction in nonverbal communication.
Although initially designed for caregivers of children with ASD, the initial implementation of this intervention revealed the utility of this approach among families of children with a range of developmental disabilities. In terms of acceptability, families almost unanimously reported that this type of intervention approach was well received and helpful. The primary constructive feedback was for caregivers to request more information and have more time with the clinician. This positive acceptability data indicates success in our efforts to make the presentation of information culturally sensitive and to use multiple modalities such as pictorial handouts and modeling to ensure the information was delivered in an effective manner via an interpreter. While instruction in one's primary language is always preferred, this approach may help to decrease disparities existing now. Given the paucity of existing ASD treatment services in Tanzania, it is important to identify as many potential avenues for dissemination of treatment and assessment services, including relying on interpretive services. This is important given the practical barriers that many families in Tanzania face in pursuing clinical services (e.g., a shortage of local clinicians combined with a limited ability for families to travel regularly to receive services).
Feasibility data revealed that although it was possible to identify appropriate modules for families and to introduce the intervention using multiple modalities, the time set aside for the intervention was insufficient for using all of the proposed instruction techniques. For example, though caregivers consistently received verbal didactics provided through an interpreter and pictorial handouts, fewer families (69%) consistently observed the clinician modeling approaches, and only 7% had an opportunity to practice the new strategies. Although families were provided with handouts from the intervention, future work is needed to move from providing parents with basic information in behavioral strategies to offering more comprehensive training. Additional research is needed to increase the feasibility in the Tanzanian cultural context of families receiving a more intensive intervention. Group-based rather than individual didactic instruction with follow-up individual appointments may be one way to increase the number of sessions in which each family can participate and to increase applied practice with behavior techniques. Similarly, training local teachers and health providers in these intervention strategies may facilitate dissemination among locals and allow augmented options for personalized home visits, thereby greatly increasing the overall public health effect. Specific approaches for engaging in parent advocacy may also be incorporated into future versions of the intervention as well as the other themes requested by parents (e.g., managing negative behavior, improving sleep, decreasing food selectivity, and increasing complex language).
Despite the strengths of developing a feasible, user-informed behavioral intervention for caregivers of children with ASD in Tanzania, there are limitations of the current project. First, it is not ideal that only a subset of parents had sufficient time to complete acceptability questionnaires. Additionally, the small sample and iterative nature of intervention development precluded examination of child outcomes. Given this was a clinical rather than a research setting, no methodological controls were established; therefore, information gleaned should be considered preliminary information and should be used to inform the development of future clinical and research practice (Stake, 1978). Future work examining the efficacy of this type of knowledge based intervention will examine parent knowledge of ASD and behavioral strategies both before and after the intervention and will evaluate parent success with mastery of behavioral strategies. In addition, future, larger scale intervention trials of more comprehensive behavioral interventions will systematically examine child outcomes, cultural relevance, and treatment fidelity. It is important to note that the sample of families who participated in the intervention was particularly well-educated and of a higher socioeconomic class than the average in Tanzania. This could be due to these families' increased time and means to hear about these types of clinics and to physically get themselves to such opportunities. Future research may be needed to examine how to disseminate these approaches more widely and to families with fewer resources. Again, one potential approach is to provide similar trainings to regional teachers and special educators for them to then disseminate with individual families.
This work has multiple implications for improving services for children with ASD in Tanzania. First, the implementation of this pilot intervention serves to create a more informed advocacy base of caregivers who can work to promote greater ASD knowledge within the community. This is particularly important given the low community knowledge of ASD in Tanzania and deep-seated regional stigmas (Manji & Hogan, 2014). As a result of limited child psychologists and psychiatrists in Tanzania, this approach is also important as it provides caregivers with basic strategies for helping their children to make gains in the present while other efforts are made to advance the availability of clinical services for children with ASD in this country. This type of intervention, while brief, serves to empower caregivers in areas without access to evidence-based treatments while working to disseminate basic education and treatment services to children with ASD. This pilot lays the groundwork for future, larger scale studies of ASD knowledge interventions, with the ultimate goal of decreasing disparities experienced as a result of low regional ASD knowledge and stigmas about ASD.
Both A.J.H. and K.A.L. were supported by a NIMH T32 5T32MH019927_20 (PI: G. Fritz), Alpert Medical School of Brown University Research Training Grant in Child Mental Health. We thank the organization Connects Autism Tanzania and the Gabriella Centre for their collaboration in reducing disparities faced by children with ASD in Tanzania. This project was supported, in part, by NIMH 5T32 MH019927-18.