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

Domeij, Helena; Fahlström, Gunilla; Bertilsson, Göran; Hultcrantz, Monica; Munthe‐Kaas, Heather Menzies; Nehlin, Christina; Helgesson, Gert

doi:10.1111/dmcn.13696

Cited by 49 publications

(50 citation statements)

References 23 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Au vu de l'ensemble des travaux répertoriés, il apparaît essentiel d'examiner les trajectoires sur lesquelles s'engagent les enfants et adolescents atteints d'un TSAF. De très récents travaux se sont intéressés à cette question (Carter et al, 2016), mais la difficulté de préciser ces trajectoires subsiste dans l'intrication complexe entre les différents facteurs impliqués dans le développement de l'enfant et également du type de prises en charge thérapeutique proposées (Domeij et al, 2018;Singal et al, 2018).…”

Section: Discussionunclassified

Neuropsychologie Des Troubles Du Spectre De L’alcoolisation Foetale

Hattouti

2020

rqpsy

View full text Add to dashboard Cite

L’objectif principal de cette revue de la littérature est de présenter une synthèse des études traitant des déficits cognitifs dans les Troubles du Spectre de l’Alcoolisation Foetale (TSAF). Son second objectif est d’offrir aux psychologues une base de données afin de les guider dans l’évaluation de ces déficits. Les études ont été sélectionnées en s’appuyant sur les bases de données internationales classiquement utilisées pour des recherches dans le domaine de la psychologie. Ces travaux mettent en évidence des déficits intellectuels, langagiers et exécutifs chez les individus atteints de TSAF. Cependant, les résultats observés divergent fréquemment d’une étude à l’autre et se heurtent à des facteurs confondants qui pourraient expliquer l’hétérogénéité des profils cognitifs observés.

show abstract

Section: Discussionunclassified

Neuropsychologie Des Troubles Du Spectre De L’alcoolisation Foetale

Hattouti

2020

rqpsy

View full text Add to dashboard Cite

show abstract

“…The clinical literature has described PAE‐related impairments in social competence, reporting that children with FASD often struggle with reading social cues, socially appropriate interactions, and establishing reciprocal peer relationships (Bishop et al, ; Domeij et al, ; Stevens et al, ). Importantly, deficits in social competence increase the risk for encountering additional challenges with social behavior development, as well as development in motor, cognitive, and emotional domains (Welsh & Bierman, ).…”

Section: Discussionmentioning

confidence: 99%

Effects of prenatal alcohol exposure on social competence: Asymmetry in play partner preference among heterogeneous triads of male and female rats

Holman

Baglot

Morgan

et al. 2019

Developmental Psychobiology

View full text Add to dashboard Cite

Social behavior deficits associated with prenatal alcohol exposure (PAE) are frequently described in terms of impaired social competence, which can be defined as the effectiveness in social interaction and the ability to employ social skills successfully within different interpersonal contexts. Play behavior—which peaks during adolescence—is critical for developing social competence, as well as for motor, cognitive, and emotional development. Studies of play behavior typically utilize protocols where animals interact in dyads. However, less is understood about how the social environment may shape PAE‐related social behavior deficits, particularly in more complex social contexts. Here, we assess play partner preference utilizing a novel approach in which adolescent male and female animals interact within same‐sex triads comprised of animals from mixed prenatal treatments to determine how play partner identity and social group composition interact to shape behavior. When triads included one PAE animal and two control animals (i.e., control animals had the option to play either with a fellow control or a PAE playmate), we observed play target asymmetry whereby controls preferentially played with fellow controls. Notably, these results were consistent for triads of both males and females, with subtle differences in frequency of initiations versus reciprocations. We found no play target asymmetry, however, when triads included two PAE animals and one control animal or different configurations of control and pair‐fed animals. Taken together, play target asymmetry resulting from ineffective social interactions, including a failure to engage with, respond to, and/or solicit play from control play partners appropriately, suggests that PAE negatively impacts the development of social competence.

show abstract

“…SBU has produced several HTAs for the past 10 years that provide examples of patient-based evidence. The topics range from living with loss of teeth and edentulousness (38), chronic pain (39), patient involvement and participation in treatments on ADHD, autism spectrum disorders, and psychosis/schizophrenia (40–42), self-harming patients’ experiences and perceptions of professional care and support (43;44), experiences of living with fetal alcohol spectrum disorders (45;46), experiences and perceptions of unaccompanied children and youth (47) to experiences of care in the fields of Endometriosis (48), Myalgic encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) (49), Psychological and psychosocial interventions in forensic psychiatric care (50), traumatic Brain Injury (51), Eating Disorders (52), and Pharmacological treatment of common pain conditions in older persons (53). All these assessments, thus, include forms of patient-based evidence originating from published scientific studies that have gone through the process of relevance and quality appraisal before the stage of synthesis (at which only studies of moderate and low risk of bias remain), and they concern how people perceive and experience their condition, their health, and their quality of life and what these mean to them.…”

Section: The Application Of Patient-based Evidencementioning

confidence: 99%

Mind the evidence gap: the use of patient-based evidence to create “complete HTA” in the twenty-first century

Staniszewska

Werkö

2021

Int J Technol Assess Health Care

View full text Add to dashboard Cite

The aim of this paper is to review the concept of patient-based evidence in health technology assessment (HTA), drawing on philosophical ideas of knowledge in order to judge whether current approaches to the use of evidence for HTA are complete. We draw on a number of key sources, including key papers and book chapters, discussion forums, agency reports, and conference presentations. We develop the potential dimensions of patient-based evidence, describe its key attributes, and consider its future development. Patient-based evidence has the potential to be a key concept in HTA, comprised of a series of related elements of importance to patients. We recognize that we raise more questions than can be answered, but as an emerging concept, recognition and understanding of patient-based evidence is still developing. The concepts and methods that support its application in HTA require urgent development. We conclude that clinical and economic forms of evidence are not enough for HTA. For HTA to be complete, we need to consider all relevant aspects of the phenomena, including patient-based evidence. There is now an urgent need for the global research and HTA community to work together to realize the full potential of patient-based evidence through conceptual and methodological development and wider recognition. We advocate that a task force be set up to address these urgent issues.

show abstract

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

Cited by 49 publications

References 23 publications

Neuropsychologie Des Troubles Du Spectre De L’alcoolisation Foetale

Neuropsychologie Des Troubles Du Spectre De L’alcoolisation Foetale

Effects of prenatal alcohol exposure on social competence: Asymmetry in play partner preference among heterogeneous triads of male and female rats

Mind the evidence gap: the use of patient-based evidence to create “complete HTA” in the twenty-first century

Contact Info

Product

Resources

About