Sánchez Gómez María C, Martín-Sevillano Rocío, Martín-Cilleros María V, Marcos J J Mena, García-Peñalvo Francisco J
Department of Didactics, Organization and Research Methods, University of Salamanca, Salamanca, Spain.
Department of Computer Science and Automation, University of Salamanca, Salamanca, Spain.
Front Psychol. 2021 Sep 13;12:661205. doi: 10.3389/fpsyg.2021.661205. eCollection 2021.
Grandparents who have grandchildren with disabilities are an underrepresented group in existing research related to the field. This qualitative phenomenological study's general purpose is to analyze, from a personal perspective, the situations and needs of grandparents who have grandchildren with Down syndrome. The participants' ages range from 65 to 85, and the ages of their grandchildren with Down syndrome range from 3 to 21 years. All participants had one grandchild with a disability, except for two, who each had two. A sociodemographic questionnaire was administered, and individual interviews were conducted, using open questions, through phone and/or video calls. An analysis of the participants' speech was carried out, which implied the development of a system of meta-categories and categories. This analysis was developed manually, given the COVID-19 environment. The results indicate a substantial change from negative feelings caused by the knowledge of the diagnosis to feelings related to positive experiences expressed currently. The participants see themselves as a fundamental source of support (informal, instrumental, practical, social, emotional, and economic) for their families and, mainly, for their grandchildren with Down syndrome. A need for information and training was observed when the grandparents talked about first being informed of the diagnosis and their concerns about the future of these grandchildren and their siblings. They made social demands, such as greater government involvement or more significant opportunities to access resources and rights for their grandchildren. The results are discussed, as are possible future research directions.
在与该领域相关的现有研究中，拥有残疾孙辈的祖父母是一个代表性不足的群体。这项质性现象学研究的总体目的是从个人角度分析拥有唐氏综合征孙辈的祖父母的情况和需求。参与者的年龄在65岁至85岁之间，他们患有唐氏综合征的孙辈年龄在3岁至21岁之间。除了两名参与者各有两个患有残疾的孙辈外，其他所有参与者都只有一个患有残疾的孙辈。研究人员发放了一份社会人口统计学调查问卷，并通过电话和/或视频通话，使用开放式问题进行了个人访谈。对参与者的谈话进行了分析，这意味着要建立一个元类别和类别系统。鉴于新冠疫情环境，这项分析是手动进行的。结果表明，从得知诊断结果时产生的负面情绪到目前所表达的与积极经历相关的情绪发生了重大转变。参与者将自己视为家庭，主要是患有唐氏综合征的孙辈的基本支持来源（非正式、工具性、实用性、社会性、情感性和经济性）。当祖父母谈到最初得知诊断结果以及他们对这些孙辈及其兄弟姐妹未来的担忧时，发现他们需要信息和培训。他们提出了社会诉求，比如要求政府更多地参与，或者为他们的孙辈提供更多获取资源和权利的重要机会。文中对研究结果进行了讨论，还探讨了未来可能的研究方向。
