The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis

Abstract

Parents of children with autism are faced with higher risks of unemployment, divorce, and poorer mental health than parents of children with other disorders. Such parenting stress can be further exacerbated by cultural and environmental factors such as the more conservative and collectivistic Asian values. Therefore, this review identifies and synthesizes literature on the parenting experiences and needs of Asian primary caregivers of children with autism using a critical interpretive method. A qualitative meta-summary was conducted. Seven electronic databases (CINAHL, Embase, ProQuest, PsycINFO, PubMed, Scopus, and Web of Science) were searched from each database’s date of inception to November 2018. In total, 44 studies were included in this review. Thirteen studies examined Asian immigrant parents’ experiences, and 31 studies were done among Asia-based parents. Six domains were identified: “personal parenting journey”; “adaptation and coping strategies”; “family, community, and social support”; “experiences with healthcare, education, and social services”; “future hopes and recommendations”; and “unique experiences of immigrants.” The distinctive influence of religious beliefs, cultural values, and environmental factors on Asian parenting experiences were discussed, and recommendations were proposed to better meet the needs of parents with autistic children.

Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low‐ and middle‐income countries: a review of reviews

“…Apart from low levels of mental health literacy common in many LAMIC, unique cultural factors play an important role in the understanding of autism, including attributing differences in children with autism to supernatural or religious causes (‘spirit possession’, ‘cursed ancestral’ or ‘God's will’). This, compounded by low community awareness across settings, reduces help seeking (Abubakar et al, 2016; Bakare, Taiwo, Bello‐Mojeed, & Munir, 2019; Franz, Chambers, von Isenburg, & de Vries, 2017; de Leeuw, Happe, & Hoekstra, 2020; Shorey et al, 2020).…”

“…Eleven reviews commented on the limited availability of services with trained professionals serving as a huge barrier to care for autism (see Table 1). This barrier affects the realization of UHC in a number of ways: the absence of skilled health providers within accessible range of families and services concentrated in metropolitan centers (Bakare et al, 2019; Shorey et al, 2020); and long waiting lists to access limited services resulting in an unequal impact on families from lower socioeconomic backgrounds (de Leeuw et al, 2020). A key recommendation by Franz et al (2017) is the development and evaluation of standardized curricula for healthcare, education, and social care professionals designed to impact on knowledge, skills, and attitudes.…”

“…Another key roadblock is the lack of autism or disability‐specific rights legislation or, in countries where disability‐specific laws were in place, an absence of support for the implementation of these policies (Bakare et al, 2019). This is compounded by low levels of awareness of autism even within the health system, in both frontline healthcare workers and professionals, with very limited opportunities for training (Al Khateeb et al, 2019; de Leeuw et al, 2020; Shorey et al, 2020; Wang, Hedley, Bury, & Barbaro, 2020), resulting in a lack of any established models of developmental surveillance. In LAMIC, the lack of a right to UHC leads to financial burden on families, since most autism services are privately accessed and result in prohibitive out of pocket expenses (Bakare et al, 2019; Hunt & Watermeyer, 2017; de Leeuw et al, 2020).…”

“…Workforce provision: The first professional point of contact for most parents of children with autism in LAMIC are primary care physicians, general pediatricians, or community health providers who are unlikely to have received any training around developmental disorders. This may result in false reassurances to families resulting in a delay in help seeking (Shorey et al, 2020). Modifying and scaling up training curriculums remains a complex and daunting task; however, innovations to train providers through virtual platforms are being evaluated (Duggal, Dua, Chokhani, & Sengupta, 2020) via the use of the ECHO model (a telemedicine platform) for improving knowledge and practice in primary care physicians (Sohl, Mazurek, & Brown, 2017).…”

Narratives of Indian Parents of Children Diagnosed with Autism Spectrum Disorder

“…These features of maternal life that got highlighted have definite consequences to the lives of these women. In a study by Shorey et al (2019), mothers frequently mentioned changing their schedules, priorities and commitments to give more time to their child. Their social lives were sacrificed, and to an extent, a sense of loneliness and isolation set in.…”