Identifying effective approaches to support parents and caregivers of children with fetal alcohol spectrum disorder

Fetal Alcohol Spectrum Disorder (FASD) is used "to describe a broader spectrum of presentations and disabilities resulting from alcohol exposure in utero."(1) FASD affects fetal and brain development and may result in limitations to any of an individual's: memory; sensory integration; social communication; language processing; emotional regulation; adaptive functioning; and other executive functions that may make conforming to social, behavioural and cognitive expectations difficult.(2; 3) These effects may mean that individuals affected by FASD are unable to live independently, have difficulty securing employment, and experience behavioural challenges that increase their risk of being in conflict with the law.

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.

O consumo de bebida alcoólica durante a gestação na perspectiva de Afaf Meleis: contribuição para a enfermagem / The consumption of alcohol during pregnancy period from Afaf Meleis perspective: a nursing contributions

Atualmente, é crescente o número de gestantes que ingerem bebida alcoólica, todavia a Organização Mundial de Saúde recomenda abstinência do uso de álcool durante a gestação. Objeto de estudo: atuação da enfermeira com mulheres que fizeram uso de bebida alcoólica durante gestação. Objetivo geral: discutir a atuação da enfermeira na prevenção do consumo de bebida alcoólica durante a gestação. Método: Pesquisa qualitativa, descritiva, exploratória utilizou o método Narrativa de Vida. Os dados foram coletados em cinco Centros de Atenção Psicossocial álcool e drogas (CAPSad) no município do Rio de Janeiro com entrevista aberta e questão norteadora: "Fale-me a respeito de sua vida que tenha relação com uso de bebida alcoólica durante gestação e as orientações recebidas no Pré-Natal". Em quatro Centros Municipais de Saúde (CMS), nos quais foram entrevistadas quatro enfermeiras atuantes no pré-natal e teve como questão norteadora: "Fale-me a respeito de sua atuação com gestantes que ingerem bebida alcoólica". As entrevistas realizadas entre fevereiro e maio de 2016, mediante aceitação e assinatura do Termo de Consentimento Livre e Esclarecido (TCLE). Critérios de inclusão das mulheres: maiores de 18 anos, terem feito uso de bebida alcoólica durante gestação, estar em tratamento no CAPSad. E das enfermeiras: realizar consultas de pré-natal. O projeto foi aprovado no Comitê de Ética e Pesquisa, sob nº 1.205.233. Todas as entrevistas foram transcritas, na íntegra. Após transcrições, retranscrições, releituras e recodificações foram agrupadas, sintetizadas e deram origem às categorias empíricas e, posteriormente, originaram as categorias analíticas que foram analisadas comparativamente, por análise temática. Resultados: emergiram das narrativas a categoria Vulnerabilidade Feminina e duas subcategorias: o consumo de álcool por mulheres durante a gestação; e atuação de enfermeiras no pré-natal na prevenção do consumo de bebida alcoólica. As narrativas foram analisadas sob a ótica do referencial teórico de vulnerabilidade e teoria da transição. Todas as unidades temáticas do estudo evidenciaram falta de informação sobre os malefícios que o álcool pode acarretar à gestante e ao feto. As mulheres omitem o consumo de álcool nas consultas de pré-natal. Receiam as críticas dos profissionais. Têm medo de matar o bebê por causa desse consumo, mas continuam bebendo. Suspeitam que o tipo e a quantidade da bebida interferem na formação fetal. As enfermeiras não conseguem captar as gestantes que fazem uso dessa substância. Aceitam que beber socialmente não acarreta prejuízos à gestante e ao feto. O conceito de vulnerabilidade possibilitou a compreensão das vulnerabilidades vivenciadas por gestantes que consumiram bebida alcoólica e das enfermeiras, nas dimensões: social, individual e programática. A teoria de transição destaca que a atuação da enfermeira deve proporcionar conhecimento e capacitação a quem vivencia o problema, promovendo transições saudáveis, baseado nas experiências únicas dos indivíduos. Conclusão: este estudo permitiu compreender a experiência vivenciada de mulheres que fizeram uso abusivo de álcool durante a gestação e que estavam em tratamento nos CAPSad. Evidenciou, também, como a Enfermagem vem atuando na prevenção dessa substância durante consultas de pré-natal. A análise das narrativas mostrou que o uso abusivo de álcool é um processo complexo, que envolve fatores psicológicos, culturais, sociais e organizacionais.

Nowadays a growing number of pregnant women made use of alcohol however the World Health Organization (WHO) recommends alcohol withdrawal during pregnancy period. Study object: practice of the nurse with women who made use of alcohol during pregnancy period. General objective: to discuss practice of the nurse in the prevention of the consumption of alcohol during pregnancy period. Method: Qualitative research, descriptive, exploratory with use of the Life Story method. Data were collected in five Psychosocial Atencion Center alchol and drugs (CAPSad) in Rio de Janeiro county with open interview and orienting question: "Tell me about your life about alcohol during pregnancy period and the orientations received by women during prenatal period". In addition, in four Health Municipal Centers (CMS), in which four nurses were interviewed acting on prenatal period, with orienting question: "Tell me about your practice with pregnant who intake alcohol". Interviews carried out between February and May of 2016, by acceptance and signed Consent Form (TCLE). Inclusion criteria of women: over 18 years old, use of alcohol during pregnancy period, and who are in treatment in the CAPSad. About nurses: to realize prenatal nursing consultations. Project obtained approval in the Research Ethics Committee under No. 1.205.233. All interviews were transcribed in its entirety. After re-transcriptions, re-readings and re-codifications were grouped, summarized and gave rise to the analytical categories that were analyzed comparatively and through thematic analysis. Results: the category Feminine Vulnerability and two subcategories emerged from the narratives: the consumption of alcohol by women during pregnancy period and practice of nurses in the prevention of the consumption of alcohol. Narratives were analyzed from theoretical framework of vulnerability and theory of transition perspective. All thematic unities evidenced lack of information on hazards/damages caused by alcohol that could affect the pregnant woman and the fetus. Women omit the consumption in the prenatal consultations. They fear that the professionals would criticize them. They are afraid of killing the baby due to this consumption, but continue to drink. They suspect that the type and amount of alcohol interfere in the fetal development. Nurses do not know about the hazards of the alcohol use during pregnancy period. They fail to capture pregnant women that made use of this substance. They accept that social drinking does not result in damages to the pregnant woman and the fetus. The concept of vulnerability made possible to understand the vulnerabilities experienced by pregnant women who made use of alcohol, as well as nurses, involving social, individual and programmatic questions. The theory of transition points out that the practice of the nurse shall, providing healthy results to the transitions, leading to the recovery of well-being through the provision of care based on the only experiences of individuals. Conclusion: this study made possible to understand the lived experiences of women during pregnancy period who are being treated in the CAPSad for alcohol abuse. Evidenced how the Nursing have been practicing in the prevention of this substance during prenatal consultations. The narratives analysis showed that the alcohol abuse is a complex process, which involves psychological, cultural, social and organizational factors.

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.

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.

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.

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.

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.

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.

O consumo de bebida alcóolica pelas gestantes: um estudo exploratório / The alcoholic beverage consumption by the pregnant women: an exploratory study

A pesquisa de natureza quantitativa de tipo exploratório teve como objetivo geral discutir os motivos/fatores que levam as gestantes a consumirem bebidas alcóolicas. O cenário foi o ambulatório de pré-natal de um hospital universitário do estado do Rio de Janeiro. fizeram parte do estudo 40 gestantes, tendo como instrumento de coleta de dados dois formulários com pergunas fechadas...

A enfermeira pediatra cuidando de crainças/adolescetnes com sídrome alcoólica fetal (SAF) / The pediatrician nurse takin g care of children/adolescents with fetal alcoholic sindrome (SAF)

Estudo realizado em uma instituição pública de neurologia com seis crianças que apresentavam diagnóstico de síndrome alcoólica fetal (SAF). Os objetivos foram: descrever as necessidades humanas básicas afetadas em crianças com SAF; identificar as áreas de desenvolvimento defasadas; e avaliar o desenvolvimento da crianças. Metodologia: pesquisa qualitativa, aprovada pelo Comitê de Ética e Pesquisa do Hospital Escola São Francisco de Assis (HESFA) e Escola de Enfemagem Anna Nery...

Is meconium screening appropriate for universal use? Science and ethics say no.

Researchers have been actively looking to biomarker development as a way to improve diagnosis in conditions such as fetal alcohol syndrome (FAS) that have typically been difficult to identify at an early stage. Meconium testing is considered a potentially useful newborn screening method. Screening for alcohol (and other drug) use is unique from all other types of newborn screening in that there is a greater element of social risk for parents, particularly mothers (public exposure of substance use with potential for child welfare involvement). There are many factors related to the science and ethics of the meconium screening process to consider before implementing universal or targeted screening. As care providers who participate in the screening and counseling process and as advocates for infants and their families, neonatal nurses should be active participants in discussions surrounding the ethical and clinical appropriateness of meconium screening program development and expansion. The science behind meconium screening at present is not strong enough to warrant widespread implementation of screening; neonatal nurses are cautioned to approach screening carefully because of the critical social implications for mother and baby.

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.