Coussens Marieke, Vitse Floris, Desoete Annemie, Vanderstraeten Guy, Van Waelvelde Hilde, Van de Velde Dominique
Faculty of Medicine and Health Sciences, Department of Rehabilitation Science, Ghent University, Ghent, Belgium
Faculty of Medicine and Health Sciences, Department of Rehabilitation Science, Ghent University, Ghent, Belgium.
BMJ Open. 2021 Apr 1;11(4):e042732. doi: 10.1136/bmjopen-2020-042732.
Participation refers to a person's involvement in activities and roles that provide interaction with others as well as engagement in family and community activities. Young children with developmental disabilities (DD) such as attention deficit hyperactive disorder, autism spectrum disorder and developmental coordination disorder are limited in their participation compared with their typically developing peers. This study aimed to obtain information regarding parental needs and strategies used to enable their child's participation.
A thematic inductive approach with in-depth interviews was used to explore parental experiences. Eleven women and two men, between 30 and 40 years of age, who had a child (4-9 years old) with a DD diagnosis based on Diagnostic and Statistical Manual of Mental Disorders criteria, participated in semistructured interviews.
Two central themes emerged: parental needs and parental strategies used to enable their child's participation. Parental needs were the following: increasing awareness, ameliorating parental burden, providing tailored interventions and supporting parents in finding suitable leisure activities. Parental strategies aimed at increasing their child's resiliency, attaining maximal fit between activity requirements and child capacity, and creating inclusive opportunities and awareness.
Understanding what families' needs are and how families use and integrate strategies within the context of their daily lives provides practitioners with insights needed to support families' resiliency in promoting their children's participation. The results have implications for professionals as this information can be used to inform, refine, or tailor participation-based and family-centred services.
参与指的是一个人参与到能与他人互动的活动和角色中，以及参与家庭和社区活动。患有发育障碍（DD）的幼儿，如注意力缺陷多动障碍、自闭症谱系障碍和发育协调障碍，与发育正常的同龄人相比，其参与度受到限制。本研究旨在获取有关父母需求以及用于促使孩子参与的策略的信息。
采用主题归纳法并进行深入访谈以探究父母的经历。11名年龄在30至40岁之间的女性和2名男性参与了半结构化访谈，他们都有一个根据《精神疾病诊断与统计手册》标准被诊断为患有发育障碍的孩子（4至9岁）。
出现了两个核心主题：父母需求以及用于促使孩子参与的父母策略。父母需求如下：提高认识、减轻父母负担、提供量身定制的干预措施以及支持父母寻找合适的休闲活动。父母策略旨在增强孩子的适应能力、使活动要求与孩子能力达到最大程度匹配，以及创造包容性机会和提高认识。
了解家庭的需求以及家庭如何在日常生活背景下运用和整合策略，能为从业者提供支持家庭增强促进孩子参与能力所需的见解。这些结果对专业人员具有启示意义，因为此信息可用于为基于参与和以家庭为中心的服务提供依据进行完善或量身定制。
