Rios Kristina, Aleman-Tovar Janeth, Burke Meghan
Kristina Rios, Janeth Aleman-Tovar, and Meghan Burke, California State University.
Intellect Dev Disabil. 2021 Dec 1;59(6):459-471. doi: 10.1352/1934-9556-59.6.459.
Advocacy is often an expectation for parents of children with intellectual and developmental disabilities (IDD). However, little is known about how advocacy may impact parent well-being, including stress, family dynamics, and marital relationships. By exploring the effects of advocacy on well-being, interventions can be implemented to support both the advocacy and well-being of parents of children with IDD. To this end, the purpose of the study was to explore the pattern between positive and negative advocacy experiences of parents of children with IDD and the well-being of parents, families, and marriages. Semi-structured interviews were conducted with 38 parents of children with IDD. Regardless of the nature (i.e., positive, or negative) of the advocacy experience, participants reported that advocacy increased their stress. When the advocacy experience was positive, some participants reported improved family quality of life. Also, regardless of the nature of the advocacy experience, some participants reported feeling frustration within their marital relationships. Implications for future research and practice are discussed.
自我倡导通常是对智障和发育障碍(IDD)儿童家长的一项期望。然而,对于自我倡导如何影响家长的幸福感,包括压力、家庭动态和婚姻关系,我们却知之甚少。通过探究自我倡导对幸福感的影响,可以实施相应干预措施,以支持IDD儿童家长的自我倡导行为和幸福感。为此,本研究的目的是探索IDD儿童家长积极和消极的自我倡导经历与家长、家庭及婚姻幸福感之间的模式。对38位IDD儿童的家长进行了半结构化访谈。无论自我倡导经历的性质(即积极或消极)如何,参与者均表示自我倡导增加了他们的压力。当自我倡导经历为积极时,一些参与者表示家庭生活质量得到了改善。此外,无论自我倡导经历的性质如何,一些参与者表示在婚姻关系中感到沮丧。文中还讨论了对未来研究和实践的启示。