An invisible problem: stigma and FASD diagnosis in the health and justice professions

2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Katharine Dunbar Winsor

Purpose Fetal alcohol spectrum disorder (FASD) is a complex lifelong disorder impacting the brain and body. Individuals with FASD may require lifelong supports and are at a higher risk of experiencing adverse outcomes, including incarceration. Individuals with FASD face stigma related to FASD that impacts disclosure of the diagnosis and access to supports. The prevalence of FASD exceeds that of other developmental disabilities, yet it remains less visible and stigmatized. Design/methodology/approach Interviews conducted with health-care and justice professionals in a Canadian province explore their experiences attending to FASD and challenges of stigma. Findings While difficult to access, diagnosis provides a pathway to supports and is crucial in the criminal justice process. Visibility and invisibility in health and justice systems highlight the lack of understanding of FASD and surrounding stigma. When unaddressed, individuals with FASD face additional challenges stemming from a lack of information and strategies by professionals involved in their lives. Originality/value Stigma represents a significant and complex issue intertwined in understandings of FASD. This research explores this relationship and the mechanisms through which FASD stigma has impacts in health-care and justice settings.

2019 ◽  
Vol 12 (1/2) ◽  
pp. 53-61
Author(s):  
Dorothy Badry ◽  
Kelly D. Coons-Harding ◽  
Jocelynn Cook ◽  
Alan Bocking

Purpose The purpose of this paper is to present a profile of the Canada fetal alcohol spectrum disorder (CanFASD) research network which is descriptive in nature and profiles the work of the network and its national activities. CanFASD is a unique Canadian, non-governmental organization whose aim is to engage cross-disciplinary research and knowledge translation for stakeholders and partners including communities, policy makers and governments. Design/methodology/approach A case study approach was undertaken to describe the network whose main focus and purpose is specifically research related to FASD. Findings The creation of CanFASD has contributed to a strong network of researchers on key topic areas including diagnosis, prevention, intervention, justice and child welfare, with a focus on evidence-based decision making, research and knowledge exchange. A key role of the network is to provide access to research and education on FASD nationally. Research limitations/implications A case study approach, while descriptive, does not provide the details of specific research projects. Originality/value CanFASD has had a key role in stimulating meaningful dialogue and research in the field of FASD. The need exists to collaboratively work on a national and international basis in response to the distinct challenges posed by FASD for individuals, families and society.


2019 ◽  
Vol 12 (1/2) ◽  
pp. 62-72 ◽  
Author(s):  
Mari Sakano ◽  
Raja Mukherjee ◽  
Jeremy Turk

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.


2019 ◽  
Vol 12 (1/2) ◽  
pp. 14-26 ◽  
Author(s):  
Kerryn Bagley

Purpose The purpose of this paper is to ascertain the experiences and practices of social and community service professionals working with Fetal Alcohol Spectrum Disorder (FASD) or suspected FASD in New Zealand. Design/methodology/approach The research examined professionals’ empirical experience of working with FASD or suspected FASD. In total, 21 participants working in practice settings relevant to dual diagnosis were interviewed, with each interview being of 1–2 h duration. The interview data were transcribed and coded using the constant-comparative method in order to derive themes. Findings Participants identified a number of barriers to understanding or working with FASD: the limited knowledge of FASD and the absence of FASD from training contexts, difficulty obtaining institutional support and the challenge of working without a diagnosis. Participants also articulated a range of strategies for approaching FASD within the identified barriers of their practice contexts, specifically: working with alternative diagnoses, focussing on adjusting expectations, adopting a strengths-based approach, actively advocating for clients when working with other sectors and systems and focussing on prevention education. Originality/value This research expands the knowledge base for social and community service practice in contexts where FASD maybe a factor contributing to poor health and well-being outcomes for clients. It clarifies the challenges that professionals face when encountering FASD or suspected FASD in their work, reveals key gaps in individual and systemic knowledge about FASD and provides new insight into what professionals do to address these challenges. It also adds to the body of research concerning FASD in the Australasian context more broadly.


2014 ◽  
Vol 8 (3) ◽  
pp. 162-178 ◽  
Author(s):  
Ingrid A Peters ◽  
Vera LN Schölmerich ◽  
Daniëlle W van Veen ◽  
Eric AP Steegers ◽  
Semiha Denktaş

Purpose – The purpose of this paper is to study the characteristics of the participants and the success of the recruitment methods and increase in knowledge of participants in reproductive health peer education. Dutch perinatal mortality rates are relatively high compared to other European countries. Non-Western ethnic minorities show particularly adverse outcomes. They seem to have low health literacy and less access to health care. Design/methodology/approach – These groups were specifically targeted, and reproductive health education covering the full spectrum of obstetric care was developed, led by specifically trained female peer educators coming from the targeted communities. Findings – “Active” recruitment methods were the most successful methods; 1,896 women and 275 men were recruited and participated in the intervention. Sixty-five per cent of the total female participants had a first-generation immigrant background. Significant knowledge improvements were found on all five measurements of reproductive behaviour and antenatal and postnatal health care system knowledge (24 per cent average knowledge increase in already knowledgeable participant group and 46 per cent in the not knowledgeable group). Active interpersonal recruitment methods were most successful in reaching the target groups. Peer education resulted in knowledge increase in these groups. Practical implications – Invest in training of educators for peer education reproductive health. Organize recruitment by verbal advertising by community organizations and social networks of peer educators. Originality/value – To the authors’ knowledge, no studies have been conducted combining investigation of the results of specific recruitment methods, the characteristics of reached participants in a multi-ethnic population and their increase in knowledge about reproductive health and care.


2019 ◽  
Vol 12 (1/2) ◽  
pp. 27-35
Author(s):  
Robyn Thomas ◽  
Raja Mukherjee

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.


2016 ◽  
Vol 15 (1) ◽  
pp. 24-32 ◽  
Author(s):  
Martin Glynn

Purpose – Desistance is increasingly conceptualised as a theoretical construct which is used to explain how offenders orient themselves away from committing crimes. Previous studies suggest that successful desistance occurs due to one or a number of factors. These factors include things such as: faith (Giordano et al., 2007); a rite of passage (Maruna, 2010); gender (Giordano et al., 2002); psychosocial processes (Healey, 2010); personal and social circumstances which are space and place specific (Flynn, 2010); ethnicity and faith (Calverley, 2013); race and racialisation (Glynn, 2014). However, to date there has been little work undertaken to examine how notions of “intersectionality” may be a more appropriate theoretical lens through which to locate and contextualise the understandings of desistance when looking at marginalised populations such as black offenders. Intersectionality is an understanding of human beings as shaped by the interaction of different social locations. These interactions occur within a context of connected systems and structure of power. Through such processes independent forms of privilege and oppression are created. The paper aims to discuss these issues. Design/methodology/approach – The paper concludes with a perspective that envisions moving towards an “intersectional model of desistance for marginalised groups such as black offenders”. Findings – It is the author’s view that the development of a intersectional model of desistance for black offenders may begin a dialogue that further pushes the study of re-entry and desistance into an area that transcends the criminal justice system and locates itself firmly within the civil and human rights of black offenders, and indeed, offenders as a whole. It is hoped that by using intersectional approaches when conducting inquiries we will be able to lead towards eradicating multiple oppressions faced by so many sections of the offender populations and the communities they come from. Research limitations/implications – This paper is positional inasmuch as it attempts to establish some, principled arguments to advance the study of desistance. Therefore, a testing of the views expressed in the paper is required. Practical implications – It is the author’s contention that for those black offenders who desire to quit crime, there needs to be networks and activities that not only support their desire to desist, but a radical reframing of how interlocking oppressions that render them subordinate must become a key driver for the desistance project. How can/do black offenders acquire and tell their own authentic narrative when it has been shaped by a history of oppression? It is therefore right to assume that meaningful reintegration of black offenders back into communities requires a deeper commitment to culturally competent rehabilitative processes, that could lead towards a culture of desistance. Social implications – An “Intersectional Model of Desistance” also needs to challenge some white criminologists’ claims by validating the black contribution to criminological theorising. This position should embrace and include perspectives which unify theoretical positions that validate interlocking oppressions; racism, poverty, ethno-cultural group membership, etc., where the broader distribution of opportunities across society, and the ability to recognise them as such as opportunities for black men to desist are taken into consideration. As part of a process of rehabilitation, black offenders need to be engaged with intersectional institutional processes and practices that will lead to a challenge of their criminal values and behaviour, designed to increase their capacity to consider desistance. It is hoped that by using intersectional approaches when conducting inquiries we will be able to eradicate multiple oppressions faced by so many sections of the offender populations and the communities they come from. Originality/value – Understanding how the experiences of black offenders, are impacted by examining interlocking oppressions of criminal justice processes; police, courts, incarceration, probation, etc., would critically assess how these intersections enhances or impedes the desistance trajectories of black offenders, in relation to offenders as a whole. As much of black offender lived reality centres on having to contend, not just with criminal justice process, but the additional oppression of racialisation, the outcomes become more heavily context dependent and driven.


2015 ◽  
Vol 4 (1) ◽  
pp. 50-64
Author(s):  
Irene Afful ◽  
Alexander Williams

Purpose – The purpose of this paper is to explore crisis management in terms of the spiritual aspects of victim recovery. The paper focuses, in particular, on victims of serious crime. Design/methodology/approach – The paper reviews the available literature on crisis management, serious crime, spirituality and pastoral support to determine their impact on trauma recovery. Semi-structured interviews were also conducted with a number of police chaplains and a hospital chaplain, in addition to police family liaison officers and witness care officers, who have in-depth involvement with victims of serious crime, to explore the support available and identify gaps against existing theory. Findings – Spiritual/pastoral support is available to police officers in the form of police chaplains. Their support is reported to be valuable in the crisis recovery process. Hospital patients report such support as integral to mental and emotional well-being and recovery. Victims of serious crime are not offered such pastoral services through the criminal justice system, though other more practical needs are provided for. This gap could have implications for the effectiveness of the criminal justice process. Research limitations/implications – The research is an exploratory study and seeks to open up debate in this arena. The research is localised to a specific region and may not generalise nationally/internationally. Practical implications – The paper evaluates the role and import of spiritual support in trauma recovery, makes a number of recommendations to plug the gap in current provision to victims of serious crime and suggests directions for further research in this area. Social implications – There are limited social implications. Originality/value – There has been very limited research conducted in this specific area and this paper seeks to redress this gap and suggests opportunities for further research to enhance victim crisis recovery and participation in the criminal justice process.


2016 ◽  
Vol 29 (8) ◽  
pp. 820-834 ◽  
Author(s):  
Canan Cengiz ◽  
Yusuf Celik ◽  
Neset Hikmet

Purpose The purpose of this paper is to evaluate the utilisation of patient wristbands (PWs) and patient identification (PI) process in a training hospital in Ankara, Turkey. Design/methodology/approach This descriptive and cross-sectional study was conducted in a training hospital with 640 beds, accreditied by Joint Commission International. The views of 348 patients and 419 hospital personnel on the implementation of patient wristbands and identification process were evaluated. Findings The results indicated that lack of information among patients about the importance of PWs and the misknowledge among staff participants on when, where, and by whom PWs should be put on and verified were the weakest points in this hospital. Research limitations/implications PI process must be strictly implemented according to the standard procedures of patient safety. Both patients and hospital personnel should be trained continuously, and training sessions must be held to increase their awareness about the importance of PWs and identification process. Practical implications Finding new ways and using new methods for increasing knowledge about PI and PWs are necessary. Hospital management should prepare a written PI and PW policy and procedure documents by taking the views of patients and hospital personnel and share these with them. Originality/value This study incorporates the views and attitudes of patients and health care personnel in improving health care quality by increasing awareness about PI and wristbands.


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