Froebel Department of Primary and Early Childhood Education, Maynooth University, Dublin, Ireland.
Special Education Department, College of Education, United Arab Emirates University, Al Ain, United Arab Emirates.
Ethn Health. 2024 Nov;29(8):1036-1053. doi: 10.1080/13557858.2024.2402537. Epub 2024 Sep 17.
While early diagnosis is fundamental to the development of children with developmental disabilities (DD), limited attention has been paid to immigrant parents' experience of early encounters with systems when they begin seeking supports for their children with DD. This study aimed to contribute to better understanding of immigrant parents' experiences of early encounters with services for families and children with suspected or diagnosed DD.
A longitudinal, qualitative approach was adopted. Over 12 months, multiple interviews were conducted with four immigrant families with children aged between two and four years who were attending a mobile playgroup offering early learning supports for children with suspected or diagnosed DD in communities with low access to formal supports. During the first three months of the study, families were accompanied by the first author on weekly visits to the playgroup. Participant observations and informal discussions with staff delivering early intervention supports via the playgroup provided further insight into families' initial and on-going encounters with services and supports. During the remaining nine months, multiple interviews were conducted with participating families, to document their on-going experiences and encounters with medical practitioners and therapists.
Thematic analysis of data generated four key themes: Initial encounters with medical professionals, Confusion and 'missed' diagnosis, Gaps in understanding, collaboration and communication, and Families' desire to learn and implement strategies.
Families made concerted efforts to locate appropriate supports. They also faced barriers including a lack of openness and genuine consultation, particularly in their encounters with health professionals. These barriers resulted in a level of mistrust and detachment from formalised supports. Results highlight the critical importance for health professionals of 'tuning into' family concerns through relationship-based approaches, in order to establish shared understanding and mutual respect between professionals and families, particularly for immigrant families seeking support for their young children.
尽管早期诊断对于发育障碍（DD）儿童的发展至关重要，但对于移民父母在开始为其患有 DD 的孩子寻求支持时与系统的早期接触的经验，关注有限。本研究旨在深入了解移民父母在为有疑似或确诊 DD 的儿童寻求服务时与家庭和儿童服务的早期接触的经验。
采用纵向、定性方法。在 12 个月的时间里，对 4 个有 2 至 4 岁儿童的移民家庭进行了多次访谈，这些家庭的孩子在社区内参加一个流动游戏小组，该小组为有疑似或确诊 DD 的儿童提供早期学习支持，这些社区获得正规支持的机会较少。在研究的头三个月，家庭由第一作者陪同每周访问游戏小组。通过游戏小组提供早期干预支持的工作人员的参与式观察和非正式讨论进一步深入了解了家庭最初和持续与服务和支持的接触。在剩下的九个月里，对参与的家庭进行了多次访谈，记录他们在与医疗从业者和治疗师的持续接触和经验。
对数据的主题分析产生了四个主要主题：与医疗专业人员的最初接触、困惑和“漏诊”、理解、协作和沟通方面的差距，以及家庭学习和实施策略的愿望。
家庭齐心协力寻找合适的支持。他们还面临障碍，包括缺乏开放性和真正的咨询，特别是在与卫生专业人员的接触中。这些障碍导致了对正式支持的一定程度的不信任和疏远。研究结果强调了卫生专业人员通过基于关系的方法“关注”家庭关切的重要性，以在专业人员和家庭之间建立共同的理解和相互尊重，特别是对于寻求支持其幼儿的移民家庭。
