scholarly journals Exploring Autism Disparities Among Latina Girls

2020 ◽  
Vol 22 ◽  
Author(s):  
Daniela N Moreira ◽  
Amber Angell
Keyword(s):  
Family Involvement ◽  
Narrative Analysis ◽  
Extended Family ◽  
Delayed Diagnosis ◽  
Autism Spectrum ◽  
Latino Families ◽  
White Family ◽  
Culturally Influenced ◽  
To Receive ◽  
Latina Girls

There is increasing evidence of ethnic and gender disparities in autism spectrum disorder (ASD) identification and receipt of services. Compared to White males, Latino children and girls are both more likely to receive a delayed diagnosis and less likely to receive high-quality services. Little is known, however, about Latina girls with ASD, including how their ‘pathway to a diagnosis’ compares to non-Latina White girls. To address this gap, this collective case study draws upon interviews with four families from two larger qualitative studies investigating ASD disparities. The purpose of this study is to compare the autism diagnosis and services experiences of three Latino families and one non-Latino White family of girls with ASD. Two researchers coded seven interviews using thematic and narrative analysis. The researchers identified three themes: 1) The Latino cases involved extended family members as both barriers and facilitators to the ASD experience, while the non-Latino case had little extended family involvement; 2) The Latino cases involved a tension between specialized ASD knowledge and culturally-influenced stigma around disability; 3) All cases suggest a female ASD phenotype that differs from the traditional ASD presentation. The study concludes with recommendations for improving support for Latino families with girls with ASD.

scholarly journals Latino and Non-Latino White Parents’ Experiences Raising their Child with ASD: An Exploratory Study

2017 ◽  
Author(s):  
Nicole Casillas ◽  
Debra Vigil ◽  
Hui-Ting Wang
Keyword(s):  
Extended Family ◽  
Autism Spectrum ◽  
Cross Cultural ◽  
Latino Families ◽  
White Families ◽  
Cultural Perspectives ◽  
Qualitative Research Design ◽  
White Parents ◽  
And Coping ◽  
Parents Experiences

There is a dearth of research about the experiences of the Latino population in raising a child with autism spectrum disorder (ASD). This includes a lack of cross-cultural perspectives and perspectives from fathers. Although there are similar experiences in raising a child with ASD among parents, we hypothesize that there will be different experiences due to culture. The current study is an exploratory qualitative research design, where we sought to understand the experiences of Latino and non-Latino White parents who are raising a child with ASD. Results indicated similarities across all families that include: self-efficacy beliefs, challenges, stress and coping, and goals and expectations. Different themes emerged in the Latino families that were not evident in non-Latino White families. Specifically, Latino families emphasized religion and faith, involvement and love, extended family support, Latino pride, and importance of collaboration. Implications are discussed for further cross-cultural family studies, the need to inform healthcare professionals on the early signs of ASD especially with regard to culture, and the importance of collaboration among parents and professionals.

Communication regarding adverse neonatal birth events: Experiences of parents and clinicians

2021 ◽  
pp. 251604352110177
Author(s):  
Davia Liba Loren ◽  
Anne Drapkin Lyerly ◽  
Lauren Lipira ◽  
Madelene Ottosen ◽  
Emily Namey ◽  
...  
Keyword(s):  
Family Involvement ◽  
Extended Family ◽  
Healthcare Providers ◽  
High Expectations ◽  
Normal Birth ◽  
Qualitative Thematic Analysis ◽  
Academic Medical ◽  
Adverse Neonatal Outcomes ◽  
Communication Challenges ◽  
Communication Dynamics

Objectives Communicating with parents about adverse birth outcomes is challenging. We sought to describe attitudes and experiences of parents and providers regarding communication about adverse newborn birth events. Methods From 2011–2012, we conducted semi-structured in-depth interviews with parents who believed they had experienced an adverse birth-related neonatal outcome and focus groups with healthcare providers who have communicated with parents about adverse newborn birth events from three geographically diverse US academic medical centers. We conducted qualitative thematic analysis to identify key themes. Results Parents and providers described unique communication challenges around adverse neonatal outcomes in six categories: 1) High expectations for a positive delivery experience and the view that birth is a life event, not a medical encounter; 2) Powerful emotions associated with birth, amplified when an adverse event occurs; 3) Rapid changes when expectations for a normal birth take a sudden negative turn; 4) Family involvement adding complexity to communication; 5) Multiple patients and providers complicating communication dynamics with inter-professional teams seeking to coordinate information and care; and, 6) Concerns about litigation surrounding the birth experience. Strategies to educate parents and enhance communication were identified by both parents and providers. Conclusion Both parents and providers experience – and may suffer as a result of – communication challenges following adverse birth events affecting the newborn. Training and resources for this care environment are needed to meet parental, extended family, and provider expectations for communication when these events occur.

Changing family model, social capital and caring: how to reconcile? the case of Lithuania

2013 ◽  
pp. 75-105
Author(s):  
Vida Cesnuityte
Keyword(s):  
Social Capital ◽  
Social Networks ◽  
Nuclear Family ◽  
Extended Family ◽  
Research Question ◽  
Main Research ◽  
Family Practices ◽  
Mother’S Day ◽  
To Receive ◽  
Family Models

The aim of the research presented in the paper is to explore the inter-relations between care processes and personal social networks as social capital in the light of the changing family models. Research of interdependence of care, social capital and family models is based on the idea of family practices suggested by Morgan. The main research question is what family practices of various family models create such social capital that ensure caring for its' members? The research hypothesis is that participation in various activities together with family members and persons beyond nuclear and extended family create dense social networks of caregivers. The analysis is based on data of representative quantitative survey carried out in Lithuania between 2011 November-2012 May within the ESF supported research project "Trajectories of family models and social networks: intergenerational perspective". Research results only partly support this hypothesis: particular family practices create networks of caregivers, but in order to involve particular persons into network of caregivers, different family practices in various family models are needed. Usually, inhabitants of Lithuania primarily expect to receive care from persons who depend to nuclear family created through marriage and extended family arisen from this relation. But persons from whom it is expected to receive care and care received differ in Lithuania. In reality, caregivers usually are children in families with children and parents in families without children. Family practices that create social networks of caregivers, and are common for all family models include annual feasts like Christmas Eve, Christmas, Easter, All Soul's Day, New Year party, Mother's Day. Various family practices differently impacting creation social networks of caregivers for different family models but usually its include joint dinner daily, Sunday lunch together, vacations with family, communication face-toface, by the telephone or Internet, consultations on important decision-making, All Soul's Day feast, Christmas celebration, Mother's Day, Gatherings of relatives, Birthday, Name-day feast, visiting cultural event together.

Scurvy mimicking as systemic lupus erythematosus

2021 ◽  
Vol 14 (6) ◽  
pp. e242958
Author(s):  
Narueporn Likhitweerawong ◽  
Nonglak Boonchooduang ◽  
Wipawee Morakote ◽  
Orawan Louthrenoo
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Vitamin C ◽  
Dietary Intake ◽  
Lupus Erythematosus ◽  
Delayed Diagnosis ◽  
Paediatric Population ◽  
Autism Spectrum ◽  
Systemic Lupus ◽  
Vitamin C Deficiency ◽  
Spectrum Disorders

Scurvy is a disease caused by chronic vitamin C deficiency. The greater prevalence was found in the paediatric population with neurodevelopmental disorders such as autism spectrum disorders due to their restricted dietary intake. Our case reported a child with autism who presented with arthralgia and anaemia. Systemic lupus erythematosus was the first diagnostic impression, resulting in over investigation and delayed diagnosis of vitamin C deficiency. After the child was treated with ascorbic acid, the child’s symptoms resolved. This case highlighted the importance of developmental and nutritional history taking in the paediatric population. Furthermore, parents and physicians should be concerned about nutritional status, especially in children with restrictive dietary intake.

scholarly journals Parenting a child with autism

2019 ◽  
Vol 68 (1) ◽  
pp. 42-47
Author(s):  
Márcia Cristina Maciel de Aguiar ◽  
Milena Pereira Pondé
Keyword(s):  
Mental Health Professionals ◽  
Social Life ◽  
Autism Spectrum ◽  
Sexual Life ◽  
Life Changes ◽  
Structured Interviews ◽  
Professional Help ◽  
Health Related ◽  
Emotional Demands ◽  
To Receive

ABSTRACT Objective: This study analyzes subjective aspects associated with parents’ perception of the changes that have affected their lives since the birth of their child with autism spectrum disorder (ASD). Methods: A qualitative study, using a narrative approach. Semi-structured interviews were conducted with 7 fathers and 16 mothers of children with ASD enrolled in a special needs school in Salvador, Bahia, Brazil. The interviews were transcribed, analytical categories were defined, and data interpreted. Results: Five categories were identified: “Emotional and Health-Related Effects”, “Effects on Daily/Professional and Academic Life”, “Effects on Marital and/or Affective/Sexual Life”, “Effects on Social Life”, “Adaptation Strategies”. The analysis showed that, despite the impacts suffered, social support, professional help can facilitate parents’ adjustment to life changes following the birth of a child with ASD. Conclusion: The physical and emotional demands of living with and parenting a child with ASD are enormous, include changes in social roles and in couples’ social and affective/sexual lives, highlighting the need for parents to receive support from healthcare professionals, particularly mental health professionals. Care strategies need to be implemented for parents, in addition to the healthcare provided to their children, in order to improve the comprehensive care given to the child with ASD.

scholarly journals The Cultural Adaptation of a Transition Program for Latino Families of Youth with Autism Spectrum Disorder

2019 ◽  
Vol 59 (2) ◽  
pp. 477-491 ◽  
Author(s):  
Jocelyn L. Kuhn ◽  
Sandra B. Vanegas ◽  
Rod Salgado ◽  
Stephanie K. Borjas ◽  
Sandy Magaña ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Cultural Adaptation ◽  
Transition Program ◽  
Autism Spectrum ◽  
Latino Families ◽  
Spectrum Disorder
Sign in / Sign up

Export Citation Format

Share Document