Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

Magnusson, Dawn; Minkovitz, Cynthia S.; Kuhlthau, Karen; Caballero, Tania Maria; Mistry, Kamila B.

doi:10.1542/peds.2017-2059

Cited by 39 publications

(32 citation statements)

References 30 publications

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“…Families looking for support systems have been a common theme in other populations of children with special health care needs, such as cancer, developmental delay, and autism [49,50]. Parents in our study were seeking communities that have experienced the same journey as they have.…”

Section: Discussionmentioning

confidence: 99%

“…Parents in our study were seeking communities that have experienced the same journey as they have. A handful of studies have examined the role of social media websites and forums and their impact on parenting and help-seeking behaviors [49,51]. For example, Thoren et al evaluated the content of communication in 1497 Facebook communities dedicated to preterm infants and found that "information sharing" (31%) and "interpersonal support" (53%) were the most common purposes of use of the Facebook groups [52].…”

Section: Discussionmentioning

confidence: 99%

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Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

et al. 2019

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Background: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. Methods: Open-ended semi-structured interviews were conducted with English or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. Results: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. Conclusions: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

et al. 2019

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“…Competing priorities Poor environmental circumstances or hazards can be root causes of physical health problems and can be related to living in poverty, war or hunger, especially in very low-income settings (WHO, 2008b). The priorities of caregivers may be mainly centred around social and financial stressors, resulting in decreased attention to the mental wellbeing and developmental trajectory of a child (Magnusson, Minkovitz, Kuhlthau, Caballero, & Mistry, 2017). As a consequence, atypical behaviour may be overlooked or there may be a delay in the process of recognition.…”

Section: Caregivers' Awareness Of the Mental Health And Developmentalmentioning

confidence: 99%

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

2020

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Autism research is heavily skewed towards western high-income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low-and middle-income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the process of identifying and diagnosing individuals with ASD is missing. This study aims to outline these factors by proposing a conceptual framework. A multidisciplinary review approach was applied to inform the development of the conceptual framework, combining a systematic review of the relevant autism research literature with a wider literature search spanning key texts in global mental health, cultural psychiatry, cross-cultural psychology and intellectual disability research. The resulting conceptual framework considers the identification, helpseeking and diagnostic process at four interrelated levels: i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms, and describes the cultural and contextual factors associated with each of these levels, including cultural norms of typical and atypical behaviour, culture-specific approaches to parenting, mental health literacy, cultural beliefs, attitudes and stigma, as well as the affordability, availability, accessibility and acceptability of services. This framework, mapping out the cultural and contextual factors that can affect the identification, help-seeking and diagnosis of ASD, may function as a springboard for the development of culturally appropriate autism screening and diagnostic instruments, and inform future cross-cultural autism research directions. The framework also has relevance for clinicians and policy makers aiming to improve support for underserved autism populations worldwide. Lay summaryThe vast majority of autism research is conducted in western high-income settings. We therefore know relatively little of how culture and context can affect the identification, helpseeking and diagnosis of autism across the globe. This paper synthesises what is known from the autism research literature and a broader literature and maps out how culture and context may affect i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms.

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“…1,15 Known barriers to connection for families include not understanding the referral process, concerns that the child or family will experience stigma if delays are revealed, and logistical barriers to obtaining services. 16,17 Because minimizing long-term disability depends on both appropriate screening as well as connection to effective developmental services, it is essential that developmental screening in primary care be bolstered by systems that facilitate referral completion and follow-up.…”

Section: Quality Reportmentioning

confidence: 99%

Ensuring Timely Connection to Early Intervention for Young Children With Developmental Delays

et al. 2018

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Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

Abstract: Understanding maternal health beliefs and expectations regarding DD and EI, acknowledging the influence of social networks on help-seeking, and addressing social and financial stressors are critical to ensuring that children with DD are identified and supported at an early age.

Cited by 39 publications

References 30 publications

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

Ensuring Timely Connection to Early Intervention for Young Children With Developmental Delays

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