Nancy Bagatell, PhD, OTR/L, is Associate Professor, Division of Occupational Science and Occupational Therapy, Department of Health Sciences, University of North Carolina at Chapel Hill;
Elena Lamarche, MA, is Research Coordinator, Department of Psychiatry, TEACCH Autism Program, University of North Carolina at Chapel Hill.
Am J Occup Ther. 2023 Mar 1;77(2). doi: 10.5014/ajot.2023.050117.
Understanding the roles of caregivers of autistic adults is important given the increasing number of autistic adults and their ongoing need for various supports.
To address the following question: What roles do caregivers enact to support autistic adults?
This study had a descriptive qualitative design. Caregivers completed a two-part interview. Data analyses included extracting narratives and a multiple-step coding process that resulted in the identification of three main caregiving themes.
Thirty-one caregivers of autistic adults.
Three main themes that reflected caregiving roles were identified: (1) managing daily living needs, (2) obtaining services and supports, and (3) providing invisible supports. Each theme comprised three subthemes. The roles were enacted regardless of the autistic adults' age, gender, adaptive behavior scores, employment status, or residential status.
Caregivers enacted many roles to support their autistic adult to participate in meaningful occupation. Occupational therapy practitioners can support autistic people across the lifespan in areas such as daily living, leisure, and executive function strategies to decrease the need for caregiving or services. They can also support caregivers as they manage the present and plan for the future. What This Article Adds: This study provides descriptions that illustrate the complexity of caregiving for autistic adults. With an understanding of the many roles that caregivers enact, occupational therapy practitioners can provide services that support both autistic people and their caregivers. Positionality Statement: We recognize that use of person-first versus identity-first language is a source of debate and controversy. We have chosen to use identity-first language, for two reasons. First, studies indicate that person with autism is the term least preferred by autistic people (e.g., Botha et al., 2021). Second, autistic is the term used by the majority of our participants during interviews.
鉴于自闭症成年人的数量不断增加，他们对各种支持的持续需求，了解照顾者的角色对于照顾自闭症成年人非常重要。
解决以下问题：照顾者为支持自闭症成年人扮演什么角色？
本研究采用描述性定性设计。照顾者完成了两部分的访谈。数据分析包括提取叙述和一个多步骤的编码过程，最终确定了三个主要的照顾主题。
31 名自闭症成年人的照顾者。
确定了反映照顾角色的三个主要主题：（1）管理日常生活需求，（2）获得服务和支持，（3）提供无形支持。每个主题都包含三个子主题。这些角色的扮演与自闭症成年人的年龄、性别、适应行为评分、就业状况或居住状况无关。
照顾者扮演了许多角色来支持他们的自闭症成年子女参与有意义的职业活动。职业治疗师可以在日常生活、休闲和执行功能策略等方面为自闭症人士提供支持，以减少对照顾者或服务的需求。他们还可以在照顾者管理现在和规划未来时为他们提供支持。
本研究提供了描述，说明了照顾自闭症成年人的复杂性。了解照顾者所扮演的许多角色，职业治疗师可以提供支持自闭症人士及其照顾者的服务。
我们认识到，使用“人先于病症”还是“病症先于身份”的语言是一个存在争议和争议的话题。我们选择使用“病症先于身份”的语言有两个原因。首先，研究表明，自闭症人士是自闭症患者最不喜欢的术语（例如，Botha 等人，2021 年）。其次，自闭症是我们大多数参与者在访谈中使用的术语。
