严重早期剥夺后成年期的神经发育问题:对临床需求和服务使用者经验的定性分析

Christopher Edwards, Mark Kennedy, Nicky Knights, Hanna Kovshoff, J. Kreppner, Barbara Maughan, Edmund J S Sonuga-Barke
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引用次数: 0

摘要

严重、长期的早期贫困与日后的神经发育障碍有关。尽管与服务提供者的接触水平较高,但这些问题往往会持续到成年,并与成年后的障碍(如失业、抑郁和焦虑症状发生率较高以及主观幸福感较差)相关联。在此,我们旨在探讨英国和罗马尼亚被收养者(ERA)研究中,那些有早期贫困史和神经发育问题的被收养者及其父母的持续服务需求和经验。我们的描述性主题分析强调了独立生活的困难,尤其是财务管理和决策问题。在获得特定形式的支持(如治疗注意力缺陷/多动障碍的药物)的情况下,这些支持往往很有帮助,尽管由于副作用,有些人对服药存在矛盾心理。然而,人们对神经发育问题并不十分了解,服务提供者也常常忽视这些问题。一线服务提供者需要进一步认识到早期逆境对神经发育的影响。参与者还发现,他们的支持需求在很大程度上没有得到满足,他们的父母不得不填补这一空白。本文还讨论了特发性神经发育障碍患者的经历与其他患者的相似之处和不同之处,并为服务提供者的教育改进提出了若干建议。
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Neurodevelopmental problems in adulthood following severe early deprivation: A qualitative analysis of clinical needs and service user experiences
Severe, prolonged early deprivation is associated with later neurodevelopmental difficulties. Despite elevated levels of contact with service providers, these problems often persist into adult life and are associated with impairment in adulthood (e.g., unemployment, higher rates of depression and anxiety symptoms and poorer subjective wellbeing). Here, we aimed to explore the ongoing service needs and experiences of adoptees and their parents from the English and Romanian Adoptees (ERA) study, in those with a history of early deprivation and neurodevelopmental problems. Our descriptive thematic analysis highlighted difficulties with independent living, particularly financial management and problems with decision-making. Where specific forms of support had been accessed (e.g., medication for attention-deficit/hyperactivity disorder) they were often helpful, although there was some ambivalence towards taking medication due to side effects. However, the neurodevelopmental problems were not well understood and were often overlooked by service providers. There is a need for greater awareness among frontline service providers of the neurodevelopmental impact of early adversity. Participants also identified that their support needs were largely unmet and that their parents were having to fill this gap. Similarities and differences between the experiences highlighted here and those identified with idiopathic neurodevelopmental disorders are discussed, as are several recommendations for educational improvements for service providers.
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