Department of Psychology, Indiana University Purdue University Indianapolis, 402 N. Blackford St., LD124, Indianapolis, IN, 46202, USA.
MIND Institute, University of California-Davis, 2825 50th Street, Sacramento, CA, 95817, USA.
J Autism Dev Disord. 2024 Jul;54(7):2471-2483. doi: 10.1007/s10803-023-05985-w. Epub 2023 May 3.
We examined parent activation in families with autistic children over time. Activation is one's belief, knowledge, and persistence in obtaining and managing one's care (e.g., patient activation) and others (e.g., parent activation) and is associated with better outcomes. Four aims were examined: the associations between baseline parent activation and follow up treatment/outcome, between changes in activation and changes in treatment/outcome, differences in activation and treatment/outcome across demographic groups (e.g., gender, race, ethnicity, and income) and comparison of results using three different assessment approaches of parent activation, the Guttman scale (standard approach) and two factor subscales (Yu et al., in J Autism Dev Disord 53:110-120, 2023). The first factor tapped into behaviors aligned with highly active, assertive parental actions (Factor 1: Activated). The second tapped into behaviors representative of uncertainty, passivity, being overwhelmed, with growing awareness of the need for activation (Factor 2: Passive). Findings varied with assessment methods applied. The two subscales assessment approach produced the strongest effect sizes. Baseline activation was related to improved child outcomes at follow-up for Factor 1: Activated and to poorer child outcomes at follow-up for Factor 2: Passive. Changes in activation were unrelated to changes in treatment/outcomes. Outcomes differed based on the activation assessment approach used. Against expectations, activation remained the same over time. Further, no differences in outcomes were observed based on race, ethnicity, or family income. The results suggest that parent activation may behave differently than patient activation based on prior studies. More research is warranted on activation of parents of autistic children.
我们考察了自闭症儿童家庭中父母的激活情况随时间的变化。激活是指一个人在获取和管理自身护理(如患者激活)和他人护理(如父母激活)方面的信念、知识和坚持程度,与更好的结果相关。本研究有四个目的:一是考察基线父母激活与随访治疗/结局之间的关联;二是考察激活变化与治疗/结局变化之间的关联;三是考察不同人口统计学群体(如性别、种族、民族和收入)之间的激活和治疗/结局的差异;四是比较使用三种不同的父母激活评估方法(Guttman 量表[标准方法]和两个因素子量表[Yu 等人,发表于 J Autism Dev Disord 53:110-120, 2023])得到的结果。第一个因素反映了与高度活跃、果断的父母行为一致的行为(因子 1:激活)。第二个因素反映了代表不确定性、被动性、不知所措,以及对激活的需求不断增强的行为(因子 2:被动)。研究结果因所应用的评估方法而异。两个子量表评估方法得出的效应量最大。对于因子 1:激活,基线激活与随访时儿童结局的改善相关,而对于因子 2:被动,基线激活与随访时儿童结局的恶化相关。激活的变化与治疗/结局的变化无关。基于所使用的激活评估方法,结局存在差异。出乎意料的是,激活随时间保持不变。此外,根据种族、民族或家庭收入,没有观察到结局的差异。研究结果表明,基于先前的研究,父母激活的行为可能与患者激活不同。需要进一步研究自闭症儿童父母的激活问题。