Olga Tennison Autism Research Centre, Department of Psychology, Counselling & Therapy, La Trobe University, Bundoora, Victoria, Australia.
Department of Psychology, Counselling & Therapy, La Trobe University, Bundoora, Victoria, Australia.
Autism Res. 2024 Jul;17(7):1475-1486. doi: 10.1002/aur.3166. Epub 2024 May 23.
Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes.
参与有意义的活动(例如休闲、精神、健身)会显著影响照顾者的生活质量(QoL),但照顾自闭症儿童的照顾者参与活动的决定因素在很大程度上尚不清楚。本研究考察了儿童和照顾者与主要照顾者参与有意义活动的相关性。在这项横断面研究中,从三组自闭症儿童中招募了 106 名自闭症儿童的主要照顾者。主要照顾者完成了在线问卷,测量职业差距(即照顾者未参与的理想活动)、生活质量、育儿压力、感知家庭结果和社会支持。除了对儿童认知和语言进行直接评估外,主要照顾者还报告了他们孩子的适应行为、社会情感技能和参与情况。与报告有较多职业差距(即≥3 项理想活动)的照顾者相比,报告职业差距较少(即≤2 项理想活动)的照顾者的孩子更有可能没有共病,年龄更大,适应行为、社会情感技能更好,家庭和学校参与更频繁。职业差距较小的照顾者还报告了生活质量、育儿压力、社会支持、社区包容性和家庭结果的改善。逻辑回归分析确定了儿童年龄、儿童适应行为、社会情感技能、家庭参与以及照顾者的感知家庭结果和生活质量是他们职业差距的重要预测因素。研究结果表明,照顾者参与理想活动与儿童的功能能力和独立性增加有关,以及他们感知满足孩子需求的能力。支持父母满足孩子需求的能力感,并建立他们的技能和知识,将有助于改善照顾者和孩子的结果。