Introduction

Caring for individuals with fetal alcohol spectrum disorders (FASD) puts a substantial and often life-long burden on affected families. Caregivers’ specific needs and demands are, however, not well understood so far. We thus aimed at systematically collecting data on the needs of individuals caring for children and adolescents with FASD.

Materials and methods

Between May 2019 and November 2020, a quantitative survey among caregivers and professionals from across Germany was performed. Participants completed a questionnaire collecting information on the perceived support caregivers receive from various sources as well as the current fulfilment of caregivers’ needs. Specifically, the fulfilment of a variety of specific needs summarised in five categories was rated by the participants on a scale ranging from 1 (very good) to 6 (insufficient).

Results

Both caregivers and professionals rated the overall fulfilment of needs rather poorly (mean: 3.94 and 4.27, respectively). Caregivers indicated needs concerning coordination of support (4.74) and relief services (4.44) to be fulfilled the least while needs in the relief services category also received the lowest average grade among professionals (4.57). The needs that the caregivers regarded as most sufficiently fulfilled were their own knowledge about FASD (mean: 1.95) and their knowledge about the causes of their child's problems (mean: 1.87).

Conclusions

The results of the present study indicate that FASD caregivers are supported insufficiently, while most of their needs remain unmet. Health care planners and providers thus urgently need to identify and implement measures to better address FASD caregivers’ needs and demands.

中文翻译：

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评估患有胎儿酒精谱系障碍的儿童和青少年的照顾者的需求：来自德国家庭和专业人士的调查结果

介绍

照顾患有胎儿酒精谱系障碍 (FASD) 的人会给受影响的家庭带来沉重且往往是终生的负担。然而，到目前为止，看护人的具体需要和要求还不是很清楚。因此，我们旨在系统地收集有关照顾患有 FASD 的儿童和青少年的个人需求的数据。

材料和方法

2019 年 5 月至 2020 年 11 月期间，对来自德国各地的护理人员和专业人士进行了定量调查。参与者完成了一份调查问卷，收集了有关护理人员从各种来源获得的感知支持以及当前护理人员需求的满足情况的信息。具体而言，参与者对概括为五个类别的各种特定需求的满足程度进行评分，评分范围为 1（非常好）到 6（不足）。

结果

护理人员和专业人员对需求的整体满足程度的评价都很差（平均值分别为 3.94 和 4.27）。护理人员表示，在协调支持 (4.74) 和救济服务 (4.44) 方面的需求最少，而救济服务类别的需求在专业人员中的平均评分也最低 (4.57)。看护者认为最充分满足的需求是他们自己对 FASD 的了解（平均：1.95）和他们对孩子问题原因的了解（平均：1.87）。

结论

本研究的结果表明，FASD 护理人员得到的支持不足，而他们的大部分需求仍未得到满足。因此，卫生保健规划者和提供者迫切需要确定和实施措施，以更好地满足 FASD 护理人员的需求和要求。