Understanding the Social Stigma of Fetal Alcohol Spectrum Disorders: From Theory to Interventions

Roozen, Sylvia; Stutterheim, Sarah E.; Bos, Arjan E. R.; Kok, Gerjo; Curfs, Leopold

doi:10.1007/s10699-020-09676-y

Cited by 38 publications

(35 citation statements)

References 76 publications

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“…Research has clearly shown that many professionals lack knowledge and training on FASD [ 7 , 46 , 47 ]. FASD can also carry stigma, which can lead to increased feelings of judgment and isolation [ 48 , 49 ].…”

Section: Discussionmentioning

confidence: 99%

Initial Feasibility of the “Families Moving Forward Connect” Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach

Petrenko¹,

Kautz‐Turnbull²,

Roth³

et al. 2021

JMIR Form Res

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Background Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard. Objective This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements. Methods Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives. Results Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers’ stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience. Conclusions The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions.

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Section: Discussionmentioning

confidence: 99%

Initial Feasibility of the “Families Moving Forward Connect” Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach

Petrenko¹,

Kautz‐Turnbull²,

Roth³

et al. 2021

JMIR Form Res

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show abstract

“…Because the direct cause of FASD is PAE, it may be seen as preventable, in principle. However, this oversimplification can be misleading and harmful, further stigmatizing and marginalizing women who consume alcohol during pregnancy, as well as individuals with FASD and their families ( Roozen et al, 2020 ).…”

Section: Complexities Of Fetal Alcohol Spectrum Disordermentioning

confidence: 99%

Responding to the Unique Complexities of Fetal Alcohol Spectrum Disorder

Flannigan¹,

Pei

McLachlan

et al. 2022

Front. Psychol.

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Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.

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“…Emphasizing adverse outcomes in FASD has prompted action, but likely also increased caregiver stress and promoted stigma. Stigma has recently been acknowledged as a significant issue in the field of FASD (e.g., Choate & Badry, 2019; Roozen et al, 2020). While understandable (and successful) in the effort to reveal the existence and importance of FASD as a condition of public interest, the focus on secondary disabilities may have perpetuated stigma by showcasing negative outcomes.…”

Section: Impact Of the Secondary Disabilities Literature: A Prompt For Action An Unintended Cause Of Stigmamentioning

confidence: 99%

A shift in perspective on secondary disabilities in fetal alcohol spectrum disorders

Olson

Sparrow

2021

Alcoholism Clin & Exp Res

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Understanding the Social Stigma of Fetal Alcohol Spectrum Disorders: From Theory to Interventions

Cited by 38 publications

References 76 publications

Initial Feasibility of the “Families Moving Forward Connect” Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach

Initial Feasibility of the “Families Moving Forward Connect” Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach

Responding to the Unique Complexities of Fetal Alcohol Spectrum Disorder

A shift in perspective on secondary disabilities in fetal alcohol spectrum disorders

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