Centre for Biomedical Ethics and Law, KU Leuven, Faculty of Medicine, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium.
Centre for Autism Expertise, Child and Youth Psychiatry, University Hospitals Leuven, Herestraat 49, 3000, Leuven, Belgium.
Eur Child Adolesc Psychiatry. 2020 Aug;29(8):1143-1154. doi: 10.1007/s00787-019-01431-4. Epub 2019 Nov 4.
Parents are valuable stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about how parents view and experience an ASD diagnosis. We investigated the evolution of parents' views and experiences of the ASD diagnosis before, right after and 12 months after their child was diagnosed. Seventeen Flemish parents waiting for their young child's diagnostic ASD assessment participated in a longitudinal study consisting of three in-depth interviews. They described their views and experiences concerning their child's ASD diagnosis at three separate moments: (T1) prior to a diagnostic ASD assessment; (T2) immediately after their final feedback session at the end of the assessment; and (T3) 12 months later. Interviews were digitally recorded, transcribed and analysed in Nvivo 11 according to the procedures of interpretative phenomenological analysis. We extracted three themes from the interview material throughout the parental journey: (T1) expecting certainty and exculpation; (T2) vulnerabilisation of the child; and (T3) pragmatic attitude and some disappointment. At T3, the parents overall had come to value the diagnosis because of two reasons: they were satisfied with their child's entitlement to ASD-related support at school, and with the diagnosis' impact on the child's relationships with parents and teachers. Many parents experienced their child with an ASD diagnosis as vulnerable, and themselves as acutely responsible for his development and future. Our findings may lead to a higher satisfaction with the clinical trajectory in both clinician and parents by inspiring a conversation between them about parents' evolving views, hopes and concerns related to their child's ASD diagnosis.
父母是自闭症谱系障碍（ASD）相关研究、临床实践和政策制定的重要利益相关者。然而，对于父母如何看待和经历 ASD 诊断，我们知之甚少。我们调查了父母在孩子被诊断出 ASD 之前、之后和 12 个月后对 ASD 诊断的看法和经历的演变。17 名等待孩子接受 ASD 诊断评估的佛兰芒父母参与了一项纵向研究，该研究包括三次深入访谈。他们在三个不同的时间点描述了他们对孩子 ASD 诊断的看法和经历：（T1）在进行 ASD 诊断评估之前；（T2）在评估结束时的最后一次反馈会议之后立即；以及（T3）12 个月后。访谈以数字方式记录、转录，并根据解释性现象学分析的程序在 Nvivo 11 中进行分析。我们从访谈材料中提取了三个主题：（T1）期待确定和免责；（T2）孩子的脆弱性；以及（T3）实用态度和一些失望。在 T3，父母总体上对诊断表示满意，原因有两个：他们对孩子在学校获得与 ASD 相关的支持的权利感到满意，并且对诊断对孩子与父母和老师的关系的影响感到满意。许多父母认为患有 ASD 诊断的孩子很脆弱，他们自己对孩子的发展和未来负有重大责任。我们的发现可能会通过激发他们之间关于父母对孩子 ASD 诊断的不断变化的看法、希望和担忧的对话，从而导致临床轨迹在临床医生和父母双方的满意度提高。
