Exploring the experiences of birth mothers whose children have been diagnosed with fetal alcohol spectrum disorders: a qualitative study

2019 ◽  
Vol 12 (1/2) ◽  
pp. 27-35
Author(s):  
Robyn Thomas ◽  
Raja Mukherjee
Keyword(s):  
Fetal Alcohol Spectrum Disorders ◽  
Service Providers ◽  
Adoptive Parents ◽  
Structured Interviews ◽  
Fetal Alcohol ◽  
Birth Mothers ◽  
Content Type ◽  
Sense Of Purpose ◽  
The Uk ◽  
Fetal Alcohol Spectrum

Purpose Fetal alcohol spectrum disorder (FASD) is an umbrella term for a range of conditions that may occur in an individual whose mother drank alcohol during pregnancy. There has been little research into the experience of birth mothers of children with FASD and no published work of this kind in the UK. This is in contrast to a number of studies that have been conducted on foster/adoptive parents. In light of the recent publication in the UK of a mixed methods study on adoptive carers, it is timely to conduct research on birth mothers in the UK. The purpose of this paper is to explore the experiences of birth mothers following a diagnosis of FASD in their children. Design/methodology/approach An interpretive phenomenological analytical approach was used to generate themes from individual semi-structured interviews of five women who are birth mothers of children with FASD. Findings Four superordinate main themes and various subthemes were identified. To blame or not to blame captures the tension the mothers experience when considering the cause of their child’s condition. Life is a series of battles which describes the struggles the women experience on a crusade with a renewed sense of purpose that captures the process of transformation that occurs, which helps describe the internal and external factors that help the mothers cope. Originality/value FASD is often described in the literature as being completely preventable with the implication that it is the mother’s fault because they drank alcohol during pregnancy. However, a statement like this fails to portray the complexities of the phenomenon of women drinking during pregnancy. Life is difficult for the women for a number of different reasons, yet a sense of hope is present. The mothers have a renewed sense of purpose to do the best they can for their child and to raise awareness of FASD. Understanding their experiences can help service providers better meet the needs of parents and children affected by FASD.

Knowing, Valuing and Acting: Relationships between information, attitudes and drinking during pregnancy / Saber, Valorar y Actuar: Relaciones entre información, actitudes y consumo de alcohol durante la gestación

2013 ◽  
Vol 13 (1) ◽  
Author(s):  
Mariana Beatriz López
Keyword(s):  
Alcohol Consumption ◽  
Fetal Alcohol Spectrum Disorders ◽  
Accurate Information ◽  
Source Information ◽  
Structured Interviews ◽  
Fetal Alcohol ◽  
Spectrum Disorders ◽  
Las Mujeres ◽  
The Relationship ◽  
Fetal Alcohol Spectrum

El consumo de alcohol durante la gestación puede dar lugar a distintos problemas de diferentes niveles de severidad, englobados en la expresión Trastornos del Espectro Alcohólico Fetal. Hasta el momento no ha podido determinarse una dosis de alcohol segura durante la gestación, por lo cual la recomendación de distintos organismos nacionales e internacionales es la abstinencia. Sin embargo, la evidencia señala que aunque muchas mujeres tiene conocimiento de que el alcohol puede alterar el desarrollo del feto, la mayoría piensa que algún consumo durante la gestación es aceptable. A través de este estudio buscamos contribuir a la comprensión de las relaciones entre información, actitudes y consumo durante la gestación. Para ello, analizamos entrevistas semiestructuradas realizadas a mujeres puérperas en Argentina (n=641). El 70,4% de las mujeres manifestó haber recibido alguna información sobre un potencial efecto adverso del consumo de alcohol durante la gestación, pero pocas de ellas poseían información precisa y sólo el 6,1% mencionó a un profesional de la salud como fuente. La información y las actitudes se encontraron fuertemente vinculadas. Las actitudes se asociaron de modo significativo al consumo de alguna cantidad de alcohol durante la gestación y al consumo excesivo episódico durante ese período. AbstractDrinking alcohol during pregnancy can lead to different problems with different levels of severity, encompassed by the term Fetal Alcohol Spectrum Disorders. Considering that a safe dose of alcohol during pregnancy has not been determined, the official recommendation of various national and international organizations is abstinence. However, the evidence indicates that although many women are aware that alcohol can alter fetal development, most of them believe that some consumption during pregnancy is acceptable. Through this study, we intend to contribute to the understanding of the relationship between knowledge, attitudes and drinking during pregnancy. To achieve this, we analyze semi structured interviews carried on with puerperal women in Argentina (n = 641). 70.4% of women reported having received some information about a potential adverse effect of alcohol consumption during pregnancy, but few of them had accurate information and only 6.1% mentioned a health professional as source. Information and attitudes were strongly linked. Attitudes were significantly associated to some alcohol consumption during pregnancy and to binge drinking during that period.

scholarly journals Psychological characteristics of internationally adopted post-institutionalized children with Fetal Alcohol Spectrum Disorders

2014 ◽  
Vol 3 (1) ◽  
pp. 35-42 ◽  
Author(s):  
Boris Gindis
Keyword(s):  
Cognitive Skills ◽  
Fetal Alcohol Spectrum Disorders ◽  
Predictive Accuracy ◽  
Adoptive Parents ◽  
Psychological Characteristics ◽  
Fetal Alcohol ◽  
Institutionalized Children ◽  
Spectrum Disorders ◽  
Fetal Alcohol Spectrum ◽  
Internationally Adopted

Gindis, B. (2014). Psychological characteristics of internationally adopted post-institutionalized children with Fetal Alcohol Spectrum Disorders. The International Journal Of Alcohol And Drug Research, 3(1), 35-42. doi:10.7895/ijadr.v3i1.133Aims: Fetal Alcohol Syndrome Disorder (FASD) is widely observed in internationally adopted (IA) post-institutionalized children. The specificity of FASD in IA children has significant practical implications and necessitates a modified methodology for identification and remediation.Design methods, and participants: Clinical case study with statistical analysis (simple frequency recorded in an Excel spreadsheet); quantitative and qualitative data was obtained through individual medical, neuropsychological, and educational assessments of 63 children, ages five to sixteen, adopted from Eastern Europe to the United States.Findings: FASD in international adoptees presents amplified characteristics typical for this condition, with the following specificities revealed in our research: rapid first-language loss and a particular pattern of English language learning; profound complex childhood trauma related to extreme deprivation and institutional upbringing; “mixed maturity” evident in impaired executive functions; low predictive accuracy during a pre-adoption screening for FASD conditions; general cognitive ability (IQ) being in the Low Average to Borderline range, with processing speed, attention, and working memory as the weakest cognitive skills; and academic achievements being higher than could be predicted based on cognitive abilities.Conclusions: FASD must be recognized as an educational handicap in our school system in order to change the outcomes for afflicted children. Educational remediation and cognitive-behavioral therapeutic intervention are the most effective remedial methods for IA children with FASD. Practical recommendations for adoptive parents include early identification and specialized remediation of “secondary” disabilities through concerted efforts of the school and family.

“Is this restaurant halal?” Surrogate indicators and Muslim behaviour

2019 ◽  
Vol 11 (5) ◽  
pp. 1105-1123
Author(s):  
Ghazala Khan ◽  
Faiza Khan
Keyword(s):  
Service Providers ◽  
Small Sample ◽  
Muslim Country ◽  
Structured Interviews ◽  
Content Type ◽  
Service Personnel ◽  
Customer Base ◽  
Additional Information ◽  
Muslim Countries ◽  
The Uk

Purpose The purpose of this study is to investigate what cues or surrogate indicators Muslims use to determine whether restaurants are suitable for dining purposes in the absence of the halal logo and to examine if the cues used are different among Muslims from non-Muslim countries as opposed to Muslims from Muslim countries. Design/methodology/approach Data were collected via semi-structured interviews in one Muslim majority (Malaysia) and one non-Muslim country (the UK). A total of 16 adults participated in the study with an equal representation from both countries. Findings In the absence of the halal logo, participants relied on extrinsic cues such as the presence of other Muslim-looking customers and service personnel to determine whether a restaurant was deemed safe for dining in. The location of a restaurant was a strong indicator for Muslims in both Muslim and non-Muslim countries. In the absence of the halal logo, participants read the menus carefully, queried the service personnel for additional information and selected safer options, such as vegetarian and seafood. Research limitations/implications The study used a small sample, and therefore, the findings are tentative. Practical implications Given the growth of Muslim population in many non-Muslim countries, it is important for restaurants in non-Muslim countries not to marginalize this customer base. Trust is a key issue and service providers without the halal logo should gain the trust of Muslim customers by training service personnel and equipping them with knowledge of what halal means, developing menus with vegetarian and seafood options, providing detailed information on ingredients and communicating this on their websites and social media sites. They could also consider working with Muslim food and travel bloggers to promote themselves to a Muslim audience. They can develop a more Muslim sympathetic marketing approach and consider using separate cooking and serving utensils to gain trust and patronage of Muslim customers as well as to appeal to a larger market (vegans/vegetarians). Originality/value The present study is one of the first studies that concentrates on gaining an insight into how Muslims make decision pertaining to the selection and dining at a restaurant in the absence of the halal logo. A major contribution of the study is the identification of cues that assist Muslims when evaluating and selecting alternative food options in the absence of a halal logo.

Behaviour and adaptive functioning in children and young people with fetal alcohol spectrum disorders: a UK study

2019 ◽  
Vol 12 (1/2) ◽  
pp. 62-72 ◽  
Author(s):  
Mari Sakano ◽  
Raja Mukherjee ◽  
Jeremy Turk
Keyword(s):  
Young People ◽  
Adaptive Functioning ◽  
Fetal Alcohol Spectrum Disorders ◽  
Alcohol Exposure ◽  
Fetal Alcohol ◽  
Birth Parents ◽  
Children And Young People ◽  
Content Type ◽  
Spectrum Disorders ◽  
Fetal Alcohol Spectrum

Purpose The purpose of this paper is to explore the profiles of behaviours and adaptive functioning in the UK children and young people with fetal alcohol spectrum disorders. Design/methodology/approach Data of 106 participants registered from 2005 to 2015 were extracted from a clinic database. In total, 99 individuals with confirmed prenatal alcohol exposure (PAE), aged from 5 to 25 years, were analysed using scaled scores of the Vineland Adaptive Behavior Scales-Second Edition (VABS-II), and the Developmental Behaviour Checklist-Primary Carer Version (DBC-P) and Teacher Version (DBC-T). Differences due to age, gender, IQ and family structure (adopted/living with birth parents) were also explored. Findings The mean composite adaptive behaviour score on the VABS-II was classified as “low” at 68.2 (SD=8.5), with the socialisation domain being the most impaired. Significantly lower VABS-II composite scores were found in individuals with lower IQ’s, older ages and in males. Disruptive behaviours were the most commonly observed on the DBCs, whereas primary carers scored significantly higher than teachers across all subscales. IQ, age and gender were not associated with the total percentile scores of both DBCs. Adoption made no differences compared to living with birth parents. Research limitations/implications Future studies would replicate these findings in a larger sample size including individuals without PAE and those living with birth parents. Originality/value This study is the first UK report that examines this issue.

Carer stress in Fetal Alcohol Spectrum Disorders: the implications of data from the UK national specialist FASD clinic for training carers

2020 ◽  
Vol 44 (3) ◽  
pp. 242-254
Author(s):  
Zameer Mohamed ◽  
Alexandra CS Carlisle ◽  
Alexandra C Livesey ◽  
Raja AS Mukherjee
Keyword(s):  
Parental Stress ◽  
Fetal Alcohol Spectrum Disorders ◽  
High Stress ◽  
Stress Index ◽  
Adaptive Behaviour ◽  
Service Development ◽  
Fetal Alcohol ◽  
Spectrum Disorders ◽  
The Uk ◽  
Fetal Alcohol Spectrum

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for ‘further professional consultation’. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

scholarly journals Intervention of Hope: Sustaining Caregivers of Children with FASD through Therapeutic Psychoeducational Camps

2012 ◽  
Vol 4 (1) ◽  
pp. 79-108
Author(s):  
Blythe Shepard ◽  
Linda K. O'Neill
Keyword(s):  
Mixed Method ◽  
Fetal Alcohol Spectrum Disorders ◽  
Positive Influence ◽  
Mixed Method Study ◽  
Structured Interviews ◽  
Fetal Alcohol ◽  
Coping Behaviour ◽  
Spectrum Disorders ◽  
Fetal Alcohol Spectrum ◽  
Qualitative Phase

Parents, whether adoptive, foster or biological, raising alcohol-affected children contend with the exhaustion of the care taking role. This article is a summary of the qualitative phase of a mixed-method study investigated the effect that attendance at a therapeutic caregiver-involved camp, Whitecrow Village Camp, had on caregivers of children with FASD.  In the qualitative phase, eighteen caregivers completed semi-structured interviews. Eight major content categories were identified in the data and five metathemes emerged under the overarching metatheme of a Life-Changing Experience: Providing Hope.  Analysis of the data suggests that attendance at Whitecrow Village Camp had a positive influence on the coping behaviour of caregivers of children with Fetal Alcohol Spectrum Disorders (FASD).

scholarly journals Fetal alcohol spectrum disorders: an overview of current evidence and activities in the UK

2021 ◽  
pp. archdischild-2020-320435
Author(s):  
Lisa Schölin ◽  
Raja A S Mukherjee ◽  
Neil Aiton ◽  
Carolyn Blackburn ◽  
Sarah Brown ◽  
...  
Keyword(s):  
Fetal Alcohol Spectrum Disorders ◽  
Current Knowledge ◽  
Policy Formulation ◽  
Current Evidence ◽  
Fetal Alcohol ◽  
Strategic Direction ◽  
Current State ◽  
Prevention Interventions ◽  
The Uk ◽  
Fetal Alcohol Spectrum

Estimates for the UK suggest that alcohol consumption during pregnancy and prevalence of fetal alcohol spectrum disorder (FASD)—the most common neurodevelopmental condition—are high. Considering the significant health and social impacts of FASD, there is a public health imperative to prioritise prevention, interventions and support. In this article, we outline the current state of play regarding FASD knowledge and research in the UK, which is characterised by a lack of evidence, a lack of dedicated funding and services, and consequently little policy formulation and strategic direction. We highlight progress made to date, as well as current knowledge and service gaps to propose a way forward for UK research.

scholarly journals Resilience in the Face of Adversity: Stories from Adults with Fetal Alcohol Spectrum Disorders

2016 ◽  
Vol 26 (1) ◽  
Author(s):  
Lyndsay Knorr ◽  
Laureen J McIntyre
Keyword(s):  
Peer Relationships ◽  
Fetal Alcohol Spectrum Disorders ◽  
Life Experiences ◽  
School Experiences ◽  
Structured Interviews ◽  
Fetal Alcohol ◽  
Helping Others ◽  
The Face ◽  
Spectrum Disorders ◽  
Fetal Alcohol Spectrum

This study explored the school and life experiences of four adults diagnosed with a fetal alcohol spectrum disorder (FASD) from an urban area in western Canada. Semi-structured interviews provided insight into the lives of these adults, including their experiences with this disorder as it related to their social interactions and peer relationships in elementary school, high school, and the community. Their educational and life experiences were examined with the goal of understanding how success is achieved among these individuals. Three major themes emerged from participant interviews: (a) “I don’t fit in”: negative school experiences leading to anger and frustration toward diagnosis; (b) intergenerational alcoholism, child abuse, and drug addiction; and (c) healing the wounds: sources of strength, success, and helping others. Despite the hardships these participants faced, they each found sources of strength and success that have allowed them to be resilient in the face of adversity.

The Public Stigma of Birth Mothers of Children with Fetal Alcohol Spectrum Disorders

2017 ◽  
Vol 41 (6) ◽  
pp. 1166-1173 ◽  
Author(s):  
Patrick W. Corrigan ◽  
Juana Lorena Lara ◽  
Binoy Biren Shah ◽  
Kathleen T. Mitchell ◽  
Diana Simmes ◽  
...  
Keyword(s):  
Fetal Alcohol Spectrum Disorders ◽  
Public Stigma ◽  
Fetal Alcohol ◽  
Birth Mothers ◽  
The Public ◽  
Spectrum Disorders ◽  
Fetal Alcohol Spectrum
Sign in / Sign up

Export Citation Format

Share Document