The majority of individuals with autism spectrum disorder live in low- and middle-income countries and receive little or no services from health or social care systems. The development and validation of autism spectrum disorder interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in low- and middle-income countries. This study qualitatively explored contextual factors relevant to the adaptation of a caregiver-mediated early autism spectrum disorder intervention in a low-resource South African setting. We conducted four focus groups and four in-depth interviews with 28 caregivers of young children with autism spectrum disorder and used thematic analysis to identify key themes. Eight contextual factors including culture, language, location of treatment, cost of treatment, type of service provider, support, parenting practices, and stigma emerged as important. Caregivers reported a preference for an affordable, in-home, individualized early autism spectrum disorder intervention, where they have an active voice in shaping treatment goals. Distrust of community-based health workers and challenges associated with autism spectrum disorder-related stigma were identified. Recommendations that integrate caregiver preferences with the development of a low-cost and scalable caregiver-mediated early autism spectrum disorder intervention are included.
The novel coronavirus 2019 (COVID-19) pandemic has led to a rapid shift in the health care landscape. To meet the psychological needs of children/adolescents in the medical setting, pediatric consultation-liaison (CL) psychologists have had to radically adapt their traditional forms of practice. Method: To understand this adaptation, a questionnaire was sent to members of the consultation-liaison and related special interest groups of the Society of Pediatric Psychology (American Psychological Association Division 54). Questions included: participant background; practice setting;
Background: Coaching caregivers to deliver Naturalistic Developmental Behavioral Intervention (NDBI) strategies to their young child with autism spectrum disorder (ASD) could help address the provider capacity barrier in sub-Saharan Africa. However, the behavioral and developmental research that underpins NDBIs is overwhelmingly drawn from high resource settings. Therefore, our understanding of joint activity routines, including play and family routines in which NDBI strategies are embedded, may have limited applicability in low resource, culturally diverse environments. Important questions remain on how to adapt NDBIs to be relevant in the family lives in these settings. This study aimed to elicit descriptions of joint activity routines from caregivers of young children with ASD in South Africa, to understand whether an NDBI-informed caregiver coaching could 'fit' within the multicultural, multilingual South African context. Methods: Four focus groups were conducted with 22 caregivers of young children with ASD who were recruited from the Western Cape Education Department autism waiting list. Data were analyzed through directed content analysis, which uses inductive methods to determine salient themes and subthemes. The predetermined initial coding classifications were based on joint activity routine categories of object-based play, sensory social routines, and family routines. Results: Participants' descriptions of caregiver-child interactions aligned with a-priori joint activity routine categories. During object-based play, caregivers engaged in turn-taking, taught developmental skills (for example cognitive, language, and fine motor skills), and participated in child-directed activities. During sensory social routines, caregivers described active, physical play, awareness of child affect, increased child expressive language, and willingness to engage with different play partners. During family routines, caregivers detailed child participation in mealtime and bath time. Conclusions: These data suggest that South African caregivers of young children with ASD use joint activity routines to engage their children and teach them new skills, thus suggesting a degree of 'fit' between South African caregiver-child interactions and an NDBI-informed caregiver coaching approach. However, more information on family routines and which caregiver interacts with the young child with ASD during these routines would help tailor these interventions for low-resource African settings.
Introduction: This study examines the relations among native and host country acculturation, identity distress, and internalizing symptoms among multicultural adolescent refugees (N = 33) resettled to the United States from a range of countries including Cuba, Iraq, Jordan, Haiti, Colombia, and Venezuela. Despite previous research supporting the advantages of developing a bicultural style to acculturation, mixed results have been found regarding native and host country acculturation patterns among resettled refugees and how these patterns may be associated with refugee mental health outcomes. Methods: The objective of this study was not only to consider the roles that US and native acculturation may play on the self-report of identity distress and internalizing symptoms among refugee adolescents more broadly, but also to consider the role various dimensions of acculturation (e.g., cultural identity, language competence, and cultural competence) may play for refugee adolescents post-resettlement. Results and Conclusions:The study indings indicate that native acculturation, and more speciically native cultural identity, may serve as signiicant protective factors against identity distress among adolescent refugees post-resettlement, with native cultural identity additionally serving as a protective factor against internalizing symptoms. US acculturation was not found to be signiicantly associated with identity distress or internalizing symptoms, nor were the acculturative dimensions of language learning (i.e., English and native language competencies), cultural knowledge (i.e., US and native cultural knowledge competencies), or US cultural identity. Recommendations and implications for practice and future research are discussed.
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. Lay abstract Most of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals’ life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts.
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