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Latino parents' perspectives on barriers to autism diagnosis.

ABSTRACT: Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis.Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system.Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.

SUBMITTER: Zuckerman KE

PROVIDER: S-EPMC4006363 | biostudies-literature | 2014 May-Jun

REPOSITORIES: biostudies-literature

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Latino parents' perspectives on barriers to autism diagnosis.

Zuckerman Katharine E KE Sinche Brianna B Mejia Angie A Cobian Martiza M Becker Thomas T Nicolaidis Christina C

Academic pediatrics 20140501 3

<h4>Objective</h4>Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.<h4>Methods</h4>Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experien ...[more]

PMID: 24767783

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Project description:BackgroundMalawi has made progress in increasing its overall modern contraceptive prevalence rate since 2000, resulting in a dramatic reduction in its total fertility rate. However, youth, 15-24 years, have not had the same successes. Teenage pregnancies are on the rise and little progress has been made in reducing unmet need for family planning among youth. With two-thirds of the population under the age of 25 and with Malawi's rapid population growth, reducing unmet need for family planning among youth remains a priority for the government's reproductive health agenda. To further explore this situation, we conducted a qualitative study to explore the perspectives of youth and adults about the drivers and barriers to youth accessing family planning in Malawi and their ideas to improve services.MethodsWe conducted 34 focus group discussions with youth aged 15-24 and parents or legal guardians of female youth in 3 districts in Malawi. Focus groups were translated and transcribed. Data was input into Dedoose and analyzed using a thematic framework to identify broader patterns and themes.ResultsYouth participants felt motivated to use family planning to protect themselves from sexually transmitted diseases and to prevent unwanted pregnancies. Females focused on the consequences of unplanned pregnancies and believed family planning services were targeted primarily at them, while males thought family planning services targeted males and females equally. Barriers to youth accessing family planning included contraception misconceptions, the costs of family planning services, and negative attitudes. Parents had mixed views on family planning. While many parents acknowledged they could play a role in supporting youth, most said they are reluctant to support youth using family planning. Participants said improving counseling services, integrating family planning services and education within school curricula, and utilizing youth clubs could improve family planning services for youth.ConclusionsPolicy makers and program implementers should consider the diverse preferences among youth and parents and continue seeking their input when designing policies and programs. Youth clubs and school-based services were among the most common suggestions. However, the effectiveness of youth clubs and school-based initiatives to increase contraceptive use among youth in Malawi is not clear.

Project description:ObjectiveWhile there is an emerging literature on the usefulness of assistance dogs for children with autism spectrum disorder (ASD), there is a dearth of quantitative data on the value of assistance dog interventions for the family unit and family functioning. Using previously validated scales and scales developed specifically for this study, we measured parents'/guardians' perceptions of how having an assistance dog affects: (1) child safety from environmental dangers, (2) public reception of ASD and (3) levels of caregiver strain and sense of competence. We also obtained open-ended response data from parents/guardians on benefits and constraints of having an assistance dog.SettingThis study was based in the primary care setting, within the context of a specific accredited assistance dog centre in Ireland.ParticipantsA total of 134 parents/guardians with an assistance dog, and 87 parents of children on the waiting list were surveyed.Primary and secondary outcome measuresThe primary outcome measures were scores on environmental hazards and public reception scales. The secondary outcome measures were scores on caregiver strain and competence scales.ResultsParents/guardians of children who have ASD and an assistance dog rate their child as significantly safer from environmental dangers (p<0.001), perceive that the public act more respectfully and responsibly towards their child (p<0.001) and feel more competent about managing their child (p=0.023) compared with parents on the waiting list. There was a concentration of positive feeling towards assistance dog interventions with particular focus on safety and comfort for children, and a sense of freedom from family restrictions associated with ASD. The amount of dedication and commitment required to care for a dog were viewed as the primary constraints.ConclusionsOur findings indicate that parents perceive that assistance dog interventions can be a valuable intervention for families with children who have ASD.

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Latino parents' perspectives on barriers to autism diagnosis.

Publications

Latino parents' perspectives on barriers to autism diagnosis.

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