Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data.

AIM: To identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families. METHOD: A systematic literature search was conducted in six electronic databases: PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Scopus. Included studies were analysed using manifest content analysis. Methodological limitations and confidence in the evidence were assessed using a modified version of the Critical Appraisal Skills Programme and the Grading of Recommendations, Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research approach respectively. RESULTS: Findings from 18 studies show that individuals with FASD experience a variation of disabilities, ranging from somatic problems, high pain tolerance, destructive behaviour, hyperactivity, and aggressiveness, to social problems with friendship, school attendance, and maintenance of steady employment. Most studies reported parents' experiences with FASD; parenting was viewed as a lifelong engagement and that the whole family is isolated and burdened because of FASD. People with FASD feel that their difficulties affect their daily life in a limiting way and make them feel different from others. INTERPRETATION: From the perspective of primarily parents, individuals with FASD and their parents face many different difficulties, for which they need societal support. WHAT THIS PAPER ADDS: Individuals with fetal alcohol spectrum disorders (FASD) feel their difficulties make them different from others. Parents think of their parenting as a lifelong engagement. There is a shortage of studies investigating experiences of children with FASD. There is a shortage of studies investigating experiences of interventions given to individuals with FASD.

The impact of fetal alcohol spectrum disorders on families: evaluation of a family intervention program.

The main purpose of the present study was to conduct a preliminary evaluation of the coaching families (CF) program, which aids families and caregivers raising children with fetal alcohol spectrum disorders (FASD). Mentors in the program work with families to educate them about FASD, access resources, and advocate on their behalf. Retrospective data from 186 families were analyzed from pre- to post-program. As expected, among caregivers there was a significant decrease in needs and increase in goal attainment from pre- to post-program. Further, there was a significant decrease in caregiver stress from pre- to post-program. Families reported high overall satisfaction with the CF program. The limitations, directions for future research, and implications for service providers were also discussed.

Drawing the line: a case study of ambivalence in sibling support for adults with complex needs.

The purpose of this article is to illuminate the dynamics of sibling group support when one sibling has complex needs accompanied by difficult behaviors. A case study of sibling support for a twenty-year-old woman with a disability, a mental health issue, and addictions, drawn from the perspectives of her full brother, her half-brother, and their mother, is presented. The brothers express ambivalence between devotion to supporting their sister and limits to the support they feel able to provide. The limits the brothers place on their support allow them to adhere to their values, preserve their energy and, ultimately, sustain their ability to provide support.

Results of a nurse-led workshop designed to prevent fetal alcohol spectrum disorder.

Preventing the negative consequences of prenatal exposure to alcohol remains an unmet challenge. This paper presents the results of a workshop, designed to increase the implementation of fetal alcohol spectrum disorders (FASD) prevention interventions in 8 counties of New York. The workshop was based on constructivist learning theory and used the Population-Based Public Health Nursing Intervention Model as the structure for discussing potential interventions. The number and type of FASD interventions implemented were determined by surveys sent out postworkshop to 167 participants. At 4 months postworkshop, 37 participants reported implementing 226 primary, secondary, and tertiary interventions in 74 different worksites. The results indicate that incorporation of constructivist learning theory shows promise for future public health and continuing education programs aimed at changing or enhancing practice.

Evaluation of a successful fetal alcohol spectrum disorder coalition in Ontario, Canada.

Leading a successful coalition that benefits both the members and the community is a difficult task. Coalitions are complex and require a great deal of skill to initiate, lead, and evaluate. This article examines a successful coalition, developed to build community capacity to address fetal alcohol spectrum disorder (FASD). FASD is a complex, multidimensional health issue common in many communities. Coalitions can be effective in tackling these types of issues and fit with community capacity-building approaches to health promotion. The Internal Coalition Outcome Hierarchy (ICOH) model (Cramer, Atwood, & Stoner, 2006a, 2006b) is used to retrospectively examine the internal constructs of the FASD Action Network and provide useful lessons learned for other coalition leaders and public health nurses. This hierarchical model demonstrates that sound internal processes lead to more successful outcomes and ultimately an increased impact on community issues. The usefulness of ICOH as a tool in evaluating the FASD Action Network and its application to other health-promotion situations with community capacity goals is described in this article.

The Family Empowerment Network: a service model to address the needs of children and families affected by Fetal Alcohol Spectrum Disorders.

Fetal Alcohol Spectrum Disorders (FASD) represent a leading cause of mental retardation and learning disabilities in children seen in pediatric offices today. This article provides an overview of FASD and describes a model program, the Family Empowerment Network (FEN). FEN is an information, referral, and support network for children and families affected by Fetal Alcohol Spectrum Disorders (FASD) and the professionals who serve them. FEN's mission includes: (a) increasing awareness about FASD by providing education, training and resources to families, providers, and the general public; (b) providing support and referrals to families affected; and (c) increasing opportunities for diagnosis and intervention. We hope to increase awareness of the resources available to nurses and their patients and provide a template that can be replicated in other service delivery systems. Pediatric nurses are in a unique position not only to assist in the recognition of children at risk of FASD, to link families to appropriate diagnostic and intervention services, but also to work to develop additional local and regional resources with other providers.

Central nervous system deficits in fetal alcohol spectrum disorder.

"Fetal alcohol spectrum disorders" is a nondiagnostic umbrella term encompassing the wide variations in clinical presentation among individuals that are prenatally exposed to alcohol. This article discusses brain development and central nervous system abnormalities and reviews prevention and interventions for these neurologic manifestations.

Fetal alcohol syndrome: a growing concern for health care professionals.

OBJECTIVE: To provide an integrated review of the literature on fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE), focusing on the definition of FAS/FAE, their incidence and related problems, gestational research findings, FAS symptoms, the effects of prenatal alcohol consumption on offspring over time, and FAS/FAE preventive measures. DATA SOURCES: Computerized searches of MEDLINE and Web sites, as well as reference lists from published articles on FAS/FAE from 1973 to present. STUDY SELECTION: Literature was chosen from refereed journals and from current publications of the National Organization of Fetal Alcohol Syndrome. DATA EXTRACTION: Data were extracted using keywords relevant to FAS and FAS prevention. DATA SYNTHESIS: The consumption of alcohol during pregnancy can harm the fetus irreparably. Preventive measures can be helpful in decreasing or stopping the use of alcohol during pregnancy. CONCLUSIONS: Alcohol is a definite teratogen. The amount of alcohol, if any, that can be safely consumed during pregnancy, the exact physiological mechanisms that make alcohol unsafe for the fetus, and the most effective prevention measures have yet to be identified. FAS/FAE is still increasing in the United States.

Two prenatal alcohol use screening instruments compared with a physiologic measure.

OBJECTIVE: To compare two prenatal alcohol use screening instruments with a physiologic measure of prenatal alcohol use. DESIGN: Retrospective comparison of the Prenatal Alcohol Use Interview (PAUI) and the ACOG Antepartum Record with CDTect. SETTING: An inner-city, high-volume, prenatal clinic. PARTICIPANTS: Fifty-six women selected and enrolled at their first prenatal visits. MAIN OUTCOME MEASURE: An assessment of relative sensitivity and specificity of two prenatal alcohol use screening instruments. RESULTS: Women identified as Drinkers by the CDTect were more likely to be identified as Drinkers by the PAUI (59%) than by the ACOG Antepartum Record (19%). Also, the PAUI had a lower false negative rate (41%) than the ACOG record (80%). That is, the PAUI was less likely to identify as Quitters women the CDTect identified as Drinkers than was the ACOG record. CONCLUSION: The PAUI is a more sensitive screen than the ACOG record and should be the instrument preferred for screening prenatal alcohol use.

The drug-exposed infant.

Drug use is a widespread problem within our society. This problem is becoming more prevalent within the perinatal population, thus affecting the neonatal population. This article explores the effects of alcohol, cocaine, and opiates on the pregnancy and neonatal outcome.

FAS/FAE: impact on children.

Alcohol is a teratogen and it can cause lasting birth defects called Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). FAS is one of the leading causes of mental retardation. FAS/FAE can result in a myriad of behavioral, learning and developmental problems. There are estimates of 12,000 new cases of FAS yearly. The school nurse plays an important advocacy and educational role in helping the child with FAS. Family involvement is important for the child with FAS.

Educating women about the hidden dangers of alcohol.

1. There is mounting research evidence that alcohol use and abuse affects women much differently than men. 2. Research indicates that women absorb and metabolize alcohol differently than men, partly due to body composition differences and the production of less gastric alcohol dehydrogenase by women. 3. Women of child-bearing age who engage in binge drinking are at increased risk of bearing children with fetal alcohol syndrome or alcohol-related neurological deficits. 4. Psychiatric nurses are often in the position to provide education and counseling to women regarding the hidden dangers of alcohol use and abuse.

Training nurses and nursing students about prevention, diagnoses, and treatment of fetal alcohol spectrum disorders.

Alcohol consumption during pregnancy can result in birth defects known as fetal alcohol spectrum disorders. This study examined whether 1-h training sessions on alcohol screening, brief intervention, diagnoses, and treatment of fetal alcohol spectrum disorders could increase practical knowledge and confidence in nurses and student nurses. Data were collected from 420 nurses (n = 95) and student nurses (n = 325) in the southeastern United States, from 2009 to 2011. Pre- and post-test data were analyzed using chi-square tests and t-tests. The post-training response rate was 84%. Nurses were more likely to know what constitutes binge drinking, facial abnormalities associated with fetal alcohol syndrome, and criteria for diagnosis. Nurses were also more confident in educating about effects of prenatal alcohol use, identifying fetal alcohol spectrum disorders and utilizing resources. Training materials may need to be improved and/or longer training programs developed for student nurses, and nursing school programs should place more emphasis on educating and preparing student nurses regarding this topic area.

Estudo das percepções de mulheres em idade fértil sobre os efeitos da ingestão de bebidas alcoólicas durante a gravidez como proposta para sistematização de práticas de ensino pela enfermagem para a prevenção dos transtornos do espectro alcoólico fetal / Estudio de las percepciones de las mujeres en edad fértil sobre los efectos del consumo de alcohol durante elembarazo como una propuesta de sistematización de la enseñanza de las prácticas de enfermería para laprevención de trastornos del espectro alcohólico fetal / Study of the perceptions of women of childbearing age about the effects of alcohol intake during pregnancy as a proposal for systematization of teaching practices by nursing for the prevention of fetal alcohol spectrum disorders

Objectives: to identify the knowledge of women about the effects of alcohol intake during pregnancy; to propose educative actions involving this topic for guidance on women's health in the pre-conception and gestational period. Method: exploratory study of quantitative character. The scenario was the Estacio de Sa University (campus Niteroi-RJ). The subjects were 99 women. A structured interview was used for data collection and it was conducted after the research was approved by the Research Ethics Committee of the University. Results: analysis of the data collected has allowed to identify women's ignorance on the subject and reduced participation of the nursing professional in the orientation of these women. Conclusion: it is necessary to increase the disclosure of these damages to health through educational campaigns promoted by health institutions and greater participation of nursing professionals in the education of this target audience.

Objetivos: identificar o conhecimento de mulheres sobre os efeitos da ingestão de álcool na gestação; propor ações educativas envolvendo este tema para orientação em saúde da mulher no período pré-concepção e gestacional. Método: estudo exploratório de caráter quantitativo. O cenário foi a Universidade Estácio de Sá(campus Niterói-RJ). Os sujeitos foram 99 mulheres. Para a coleta de dados, utilizou-se uma entrevista estruturada, a qual foi realizada após aprovação da pesquisa pelo Comitê de Ética em Pesquisa da universidade. Resultados: a análise dos dados coletados permitiu identificar desconhecimento das mulheres sobre o assunto e reduzida participação do profissional de enfermagem na orientação destas mulheres. Conclusão: necessita-se aumentar a divulgação destes danos à saúde em campanhas educativas promovidas pelas instituições de saúde e maior participação do profissional de enfermagem na educação deste público-alvo.

Objetivos: Identificar el conocimiento de las mujeres sobre los efectos de la ingesta de alcohol durante el embarazo; proponer acciones educativas envolviendo este tema para orientación sobre la salud de la mujer en el período previo a la concepción y gestación. Método: estudio exploratorio de carácter cuantitativo. El escenario fue la Universidad de Estácio de Sá (campus Niterói-RJ). Los sujetos fueron 99 mujeres. Para la recolección de datos se usó una entrevista estructurada realizada después de la aprobación de la investigación por la Comisiónde ética de investigación de la Universidad. Resultados: el análisis de los datos recogidos ha identificado la ignorancia de las mujeres sobre el tema y reducida participación de enfermería en la orientación de estas mujeres. Conclusión: Se necesita aumentar la divulgación de estos daños de salud en campañas educativas promovidas por las instituciones de salud y una mayor participación de la enfermería en la educación de este público.