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Six‐Month Follow‐up of the Families on Track Intervention Pilot Trial for Children With Fetal Alcohol Spectrum Disorders and Their Families

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Background When the primary disabilities associated with fetal alcohol spectrum disorders (FASD) are not well supported, individuals are at higher risk for mental health problems and other secondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary conditions and improve family functioning in children with FASD. Promising results from a pilot study demonstrated positive effects on child and caregiver outcomes immediately following the intervention. The objective of this study was to examine the sustainability of these effects 6 months postintervention. Methods Thirty children (ages 4 to 8) with prenatal alcohol exposure and their caregivers were enrolled in the original study. Families were randomized to the FOT intervention or an active comparison group that provided comprehensive assessment and individualized feedback. The intervention integrated a positive parenting curriculum and a child skills group. Families were assessed at baseline, postintervention, and 6‐month follow‐up visits. Follow‐up data were available for 24 families on child and caregiver outcomes. Data were analyzed using effect size calculations and analysis‐of‐variance techniques. Results Relative to the comparison group, intervention families showed continued gains in parenting efficacy and maintained prior improvements in FASD knowledge over the follow‐up period. Although intervention families reported a decrease in their needs being met over the follow‐up period, they continued to report their needs being met to greater extent than those in the comparison group. Consistent with postintervention outcomes, children in both groups exhibited similar decreases in child disruptive behavior 6 months following the intervention. Unfortunately, positive gains seen at postintervention for child self‐esteem and emotion regulation were attenuated at follow‐up. Conclusions This pilot study yielded promising effects on important areas of caregiver functioning. However, the intervention's impact on child functioning waned over time, suggesting the need for sustained or alternate child intervention.
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Six-Month Follow-up of the Families on Track Intervention
Pilot Trial for Children With Fetal Alcohol Spectrum
Disorders and Their Families
Christie L. M. Petrenko , Elizabeth M. Demeusy, and Michelle E. Alto
Background: When the primary disabilities associated with fetal alcohol spectrum disorders
(FASD) are not well supported, individuals are at higher risk for mental health problems and other sec-
ondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary con-
ditions and improve family functioning in children with FASD. Promising results from a pilot study
demonstrated positive effects on child and caregiver outcomes immediately following the intervention.
The objective of this study was to examine the sustainability of these effects 6 months postintervention.
Methods: Thirty children (ages 4 to 8) with prenatal alcohol exposure and their caregivers were
enrolled in the original study. Families were randomized to the FOT intervention or an active comparison
group that provided comprehensive assessment and individualized feedback. The intervention integrated
a positive parenting curriculum and a child skills group. Families were assessed at baseline, postinterven-
tion, and 6-month follow-up visits. Follow-up data were available for 24 families on child and caregiver
outcomes. Data were analyzed using effect size calculations and analysis-of-variance techniques.
Results: Relative to the comparison group, intervention families showed continued gains in parent-
ing efficacy and maintained prior improvements in FASD knowledge over the follow-up period.
Although intervention families reported a decrease in their needs being met over the follow-up period,
they continued to report their needs being met to greater extent than those in the comparison group.
Consistent with postintervention outcomes, children in both groups exhibited similar decreases in child
disruptive behavior 6 months following the intervention. Unfortunately, positive gains seen at postin-
tervention for child self-esteem and emotion regulation were attenuated at follow-up.
Conclusions: This pilot study yielded promising effects on important areas of caregiver functioning.
However, the intervention’s impact on child functioning waned over time, suggesting the need for sus-
tained or alternate child intervention.
Key Words: Fetal Alcohol Spectrum Disorders, Prenatal Alcohol Exposure, Intervention,
Secondary Conditions.
FETAL ALCOHOL SPECTRUM disorder (FASD) is
an umbrella term for a variety of conditions that are
related to prenatal alcohol exposure (PAE). PAE can be
associated with facial abnormalities (short palpebral fissures,
thin vermilion border of upper lip, smooth philtrum), growth
deficiency, abnormal brain growth, structure, or neurophysi-
ology, and/or neurobehavioral impairment (e.g., intellectual
functioning, learning, memory, visualspatial skills, execu-
tive functioning, and self-regulation; Hoyme et al., 2016;
Mattson et al., 2011). The specific diagnoses on the fetal
alcohol spectrum vary in the combinations of characteristics
that are present. This individual variability in features and
magnitude of functional impairment are related to complex
interactions between the dose and pattern of alcohol expo-
sure and other pre- and postnatal factors such as genetics,
nutrition, co-occurring substance exposures, maternal
health, and postnatal environment (May et al., 2011, 2014).
Beyond these proximate impairments, individuals with
FASD are also at risk for mental health conditions and other
subsequent adverse life outcomes, often referred to as sec-
ondary conditions (Streissguth et al., 2004). These secondary
conditions manifest across domains of functioning and can
include mental health, school, employment, independent liv-
ing, and criminal problems. Mental health conditions are
prevalent across the life span, while other secondary condi-
tions typically emerge during adolescence and adulthood.
Early diagnosis and service provision to address the proxi-
mate impairments of FASD and PAE and to increase protec-
tive factors can help prevent the development of these more
distal, secondary conditions (Streissguth et al., 2004).
FASD Interventions
FASD incurs a high monetary cost for individuals, their
families, and society, as individuals with FASD often utilize
From the Mt. Hope Family Center, University of Rochester, Roche-
ster, New York.
Received for publication February 9, 2019; accepted August 1, 2019.
*Reprint requests: Christie L. M. Petrenko, PhD, Mt. Hope Family
Center, University of Rochester, 187 Edinburgh St, Rochester, NY 14608;
Tel.: 585-275-2991; Fax: 585-454-2972; E-mail: Christie.pe-
trenko@rochester.edu
©2019 by the Research Society on Alcoholism.
DOI: 10.1111/acer.14180
2242 Alcohol Clin Exp Res, Vol 43, No 10, 2019: pp 2242–2254
ALCOHOLISM:CLINICAL AND EXPERIMENTALRESEARCH Vol. 43, No. 10
October 2019
... Among the 21 studies reviewed, 10 (47%) of the studies reported on parental satisfaction following the intervention (Coles et al., 2018;Kable et al., 2007;Kable et al., 2012;Kable et al., 2016;Petrenko et al., 2019;Gibbs, 2019;Leenaars et al., 2012;O'Connor et al., 2016;Zarnegar et al., 2016). Of these, five (23%) of the studies reported that parents became better informed and gained greater knowledge about FASD (Coles et al., 2009;Gibbs, 2019;Kable et al., 2007;Kable et al., 2012;. ...
... Specifically, some studies used the Knowledge and Advocacy Scale (K&A) to measure parent knowledge about FASD following the intervention (Kable et al., 2012;. Parents in the FMF intervention reported greater knowledge of the disability, as evidenced by scores going from 26.27 to 31.07 , with sustained effect at six months follow-up with a score of 31.21 for the intervention group (Petrenko et al., 2019). ...
... Furthermore, parent satisfaction was measured using PSOC satisfaction with scores going from 35.47 at pre-test to 37.40 for the intervention group , and 36.57 at sixmonth follow-up testing (Petrenko et al., 2019). In the NMT intervention, parents completed a "parent satisfaction survey questionnaire" and 18/20 caregivers reported that they were better able to identify the needs of the children, understand the children's behaviour and reported improvement in their caregiving capacities (Zarnegar et al., 2016). ...
Preprint
Background: Fetal Alcohol Spectrum Disorder (FASD) is a chronic childhood disorder that occurs in individuals who were prenatally exposed to alcohol. FASD results in many developmental challenges including academic concerns, social difficulties, and deficits in higher-order cognitive functions, commonly known as executive function. Due to the challenges across many domains, caregivers report high levels of stress. The purpose of this scoping review is to evaluate current empirical research on the usefulness of family-focused interventions for children with FASD and their caregivers. Methods: We identified 520 peer-reviewed, empirical articles published between 2003-2023. We searched relevant internet databases, including Google Scholar, CINAHL, PsycINFO, Medline, and PubMed. Empirical articles that were written in English, focused on family interventions, and recruited children/adolescents with FASD were selected. A total of 21 articles were used in this review paper. Results: Out of the 21 studies reviewed, 17 used quantitative methods, 3 used qualitative, and one used a mixed-methods approach. Four studies investigated the Child Friendship Training intervention, three examined the GoFAR and Alert program interventions, and two focused on the MILE intervention. Individual studies explored various other interventions, including theatre-based, coaching families (CF), Neurosequential Model of Therapeutics (NMT), and Project Step Up (SUI) interventions. The majority of the studies reviewed (14/21, 66.6%) indicated significant positive changes in the child’s externalizing and internalizing behaviour, (7/21, 33.3%) social skills and some reduction in parenting stress (4/21, 19.0%) following the family focused intervention. Conclusion: This review provides preliminary evidence highlighting the benefits of offering family-focused intervention for families of children with FASD, However, evidence-based research on these interventions remains limited, and more studies are needed to better understand their efficacy for families of children with FASD. More feasibility and randomized controlled trials are needed to further explore the scope of family-focused interventions, identify necessary program adaptations needed, and benefits for families with children diagnosed with FASD. Policymakers, educators, and clinicians can use the existing information to adapt and implement programs supporting caregivers and their children with FASD.
... El Trastorno del Espectro Alcohólico Fetal reúne una heterogeneidad de condiciones relacionadas con la exposición prenatal al alcohol, asociadas a anomalías faciales, de crecimiento y de peso inusual considerando los parámetros establecidos por edad, a irregularidades en las estructuras cerebrales y dificultades neurocognitivas, entre las que se incluye el deterioro en la capacidad intelectual, dificultades para el aprendizaje, alteraciones en la memoria y déficits en la capacidad visoespacial, en el funcionamiento ejecutivo y en la capacidad de autorregulación (Hoyme et al., 2016). Más allá de estas inherentes particularidades del TEAF, existen otras que suponen un obstáculo adicional que afecta a la calidad de vida como, por ejemplo, dificultades en el funcionamiento autónomo y en las actividades de la vida diaria, afecciones en la salud mental, problemas con la justicia y barreras para el aprendizaje y en la participación en la comunidad (Petrenko et al. 2019). ...
... Así, el entorno familiar juega un papel fundamental a la hora de determinar el grado de desarrollo de sus hijos, y más concretamente, del niño, niña y adolescente con un diagnóstico de Trastorno del Espectro Alcohólico Fetal (Olson et al., 2009). Sin embargo, la mayoría de las familias se encuentran con multitud de obstáculos como, por ejemplo, las necesidades individuales del niño junto a las implicaciones subyacentes del diagnóstico, las interpretaciones erróneas por parte la sociedad sobre las condiciones conductuales del TEAF, la falta de conocimiento sobre este trastorno por parte de la comunidad educativa y la ausencia de un diagnóstico temprano (Petrenko et al. 2019). ...
Chapter
Full-text available
El Trastorno del Espectro Alcohólico Fetal reúne una heterogeneidad de condiciones relacionadas con la exposición prenatal al alcohol, asociadas a anomalías faciales, de crecimiento y de peso inusual considerando los parámetros establecidos por edad, a irregularidades en las estructuras cerebrales y dificultades neurocognitivas, entre las que se incluye el deterioro en la capacidad intelectual, dificultades para el aprendizaje, alteraciones en la memoria y déficits en la capacidad visoespacial, en el funcionamiento ejecutivo y en la capacidad de autorregulación (Hoyme et al., 2016). Más allá de estas inherentes particularidades del TEAF, existen otras que suponen un obstáculo adicional que afecta a la calidad de vida como, por ejemplo, dificultades en el funcionamiento autónomo y en las actividades de la vida diaria, afecciones en la salud mental, problemas con la justicia y barreras para el aprendizaje y en la participación en la comunidad (Petrenko et al. 2019). Para hacer frente a estas barreras, es preciso un proceso de cambio. En el contexto de la educación inclusiva, este proceso no solo involucra a las escuelas y a los miembros que la conforman, sino también a las Administraciones Públicas y a los agentes externos que abogan por una enseñanza equitativa para toda la diversidad del alumnado (Sandoval et al., 2002). Tomando en consideración la dimensión cultural del Index for Inclusion, la labor de las familias es esencial para trabajar en sintonía con el centro educativo y los agentes implicados hacia una filosofía de inclusión. Así, el entorno familiar juega un papel fundamental a la hora de determinar el grado de desarrollo de sus hijos, y más concretamente, del niño, niña y adolescente con un diagnóstico de Trastorno del Espectro Alcohólico Fetal (Olson et al., 2009). Sin embargo, la mayoría de las familias se encuentran con multitud de obstáculos como, por ejemplo, las necesidades individuales del niño junto a las implicaciones subyacentes del diagnóstico, las interpretaciones erróneas por parte la sociedad sobre las condiciones conductuales del TEAF, la falta de conocimiento sobre este trastorno por parte de la comunidad educativa y la ausencia de un diagnóstico temprano (Petrenko et al. 2019). La investigación actual sobre TEAF debe progresar en pro de la evaluación de los dominios afectados por el TEAF (fisionómicos, neurocognitivos, etc.), considerando no solo la perspectiva clínica, sino también la de los cuidadores de la persona afectada con este trastorno (Zameer et al., 2020). De manera específica, es preciso un abordaje de los dominios cognitivos afectados por el TEAF, que incluyen trastornos del neurodesarrollo, discapacidad intelectual, déficit de atención, hiperactividad, dificultades para el aprendizaje, velocidad de procesamiento disminuida, problemas en la memoria de trabajo, problemas en el lenguaje receptivo, comprensión deficiente del contexto social, alteraciones del comportamiento y de la función ejecutiva, a lo largo del ciclo vital, es decir, se necesita una recopilación de información en población infantil, adolescente, adulta y anciana para discernir cómo
... For example, the Parents under Pressure program, originally designed for a non-FASD population but adapted for families affected by FASD, involves developing a tailored, individual case plan including child cognitive skills training, caregiver psychoeducation, and consultation with the child's school (Reid et al., 2017). Similar programs include Families on Track (Petrenko et al., 2019), Strongest Families (Hundert et al., 2016), Families Moving Forward (Bertrand, 2009) and SEEDS (Hajal et al. 2019), all of which involve some form of longterm and/or personalized support. ...
... Only one published FASD parent/caregiver training program was identified (Gibbs, 2018), a useful conclusion from which was adopted for SPECIFiC: namely, that participants valued learning from a trainer with real-world FASD caregiving experience. Several other FASD interventions had parenttraining components (Bertrand, 2009;Coles et al., 2018;Hajal et al., 2019;Hundert et al., 2016;Leenaars et al., 2012;Petrenko et al., 2019;Reid et al., 2017), although these were usually focused on specific aspects of FASD rather than general FASD training. A number of effective parenting programs exist for generic parenting skills (Pidano & Allen, 2015;Sanders, 2008) and other disorders or difficulties, such as Autism (McConachie et al., 2005)) and externalizing behavioral difficulties (Timmer et al., 2019), but not for FASD. ...
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Damage to the central nervous system is a unifying concept for nearly all of the diagnoses that fall under the Fetal Alcohol Spectrum Disorders (FASD) umbrella. Thus, FASD are an important public health and social problem worldwide that consumes a large amount of resources, both economic and societal by imparting a large burden on society through such sectors as the healthcare system, mental health and substance abuse treatment services, foster care, the criminal justice system, and the long-term care of individuals with intellectual and physical disabilities. Existing estimates of the economic impact of FASD demonstrate significant cost implications on the individual, the family and society. Many of the costs associated with FASD can be reduced with the implementation of effective social policies and intervention programs.
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Background and aims: Limited research has focused on parenting practices used by caregivers raising children with fetal alcohol spectrum disorders (FASD). The current study hypothesized that parental attributions of children's misbehavior would relate to the parenting strategies caregivers utilize with children with FASD. This study also aimed to develop a coding scheme to allow quantification of these treatment-relevant constructs in future intervention trials. Methods: Thirty-one caregivers of children with FASD (age 4-8) were interviewed with the Parenting Practices Interview (PPI), a study-developed qualitative interview. Quantitative measures of FASD knowledge, parenting sense of competence and stress, and child behavior problems were included. Mixed-method analyses assessed the relationship between parental attributions of misbehavior and parenting practices. Results: Caregivers who attributed their child's misbehavior to underlying neurodevelopmental disabilities were more likely to use antecedent strategies and feel more confident in managing their child's behavior. Parents who attributed their child's misbehavior to willful disobedience were more likely to rely on consequence strategies and feel more ineffective. Conclusions: Results are consistent with theoretical models for FASD parent training interventions. Assessment of theorized mechanisms of change in intervention trials is needed; the development of the PPI and quantitative coding system will facilitate this type of research.
Article
Background There is a notable absence of evidence based early interventions for young children with FASD. Objective This study examines clinicians' perspectives regarding the needs of caregivers of children with FASD and how such perspectives informed the development of a family-centered early intervention for young children with prenatal alcohol exposure. Method19 professionals who work with children with prenatal alcohol exposure and / or in out-of-home care were recruited to participate in focus groups. The facilitator used a semi-structured topic guide to elicit feedback from participants. These data were transcribed, coded, and categorized to reflect themes in a manner informed by a grounded theory approach. A second investigator repeated the process. Codes were chosen and assigned to data by consensus. ResultsThe coded data yielded five distinct perceived challenges faced by caregivers: (1) seeking and possibly receiving a diagnosis; (2) processing emotions and coming to terms with the child's difficulties; (3) seeking support and belonging within a knowledgeable community; (4) developing a new understanding of the child's behavior; and (5) becoming an educator, advocate, and expert on the child and FASD. Conclusion Professionals believe specific capacities are essential insofar as the human service systems that caregivers engage are perceived to be under-equipped to respond to the distinct set of challenges faced by children with FASD and their families. Findings are discussed in terms of how the proposed intervention was designed to address such challenges and to cultivate those key capacities in order for families to meet their children's needs.
Article
Background: Individuals with fetal alcohol spectrum disorders (FASDs) can experience profound impairments and long-term adverse outcomes. This systematic review adopts a life span perspective providing an extensive analysis of the available literature. Methods: Studies were identified from PsycInfo, PubMed, Scopus, Web of Knowledge, CINAHL, ERIC, The Cochrane Central Register of Controlled Trials, and gray literature. Two reviewers independently screened the title and abstract of each reference, and the methodological rigor of the included studies was assessed using the Effective Public Health Project assessment tool. Results: Thirty-two studies met the inclusion criteria, of which the vast majority targeted early to middle childhood. Two studies focused on early intervention in the postnatal period, and 6 studies aimed to improve attention and/or self-regulation in childhood. Three of these provided promising evidence on improving self-regulatory difficulties for children with FASDs. Nine studies focused on improving specific areas of dysfunction. Six studies addressed social skills; 3 of these used an adaptation of a well-validated social skills program. Three studies provided promising initial evidence that parents and caregivers could benefit from support with child behavior and a further 4 studies provided education and advocacy for parents/caregivers, teachers, or child welfare workers. The final 2 studies were aimed at supporting parents who were themselves affected by prenatal alcohol exposure. Conclusions: There is growing evidence for interventions that improve outcomes for early to middle childhood. However, a lack of research exists outside of this developmental period. This lack of research is concerning given the potential positive impact of early intervention, for individuals and, financially, for governments. In addition, the lack of interventions for adolescents and adults further highlights the widening developmental gap and the potential influence of secondary disabilities for this at-risk population.