Baena Sofía, Jiménez Lucía, Bejarano Sonia, Hidalgo Victoria
Department of Psychology, Universidad Loyola Andalucía, Seville, Spain.
Department of Developmental and Educational Psychology, Universidad de Sevilla, Seville, Spain.
J Autism Dev Disord. 2024 Sep 6. doi: 10.1007/s10803-024-06537-6.
Grandparents play different roles in families of children and adolescents on the autism spectrum. They are frequently engaged in caregiving tasks with the person on the autism spectrum, providing emotional and instrumental support to the family. However, despite their frequent involvement and the importance of their role in the family, there are few studies that address the experiences of these grandparents, particularly in the Spanish and southern Europe context. This study explores the impact and needs of having a grandchild on the autism spectrum and the resources that grandparents have and use to face the difficulties that arise. A semi-structured interview was carried out with 17 grandparents of children and adolescents on the autism spectrum. We conducted a coding reliability thematic analysis of the impact and used a quantitative content analysis of grandparents' needs and resources. Results indicated three main aspects related to the impact: personal growth, wanting to help and not being able to, and suffering at three levels: for themselves, their sons and daughters, and grandchildren. Grandparents perceived needs in four contexts: their own needs, the needs of the nuclear family, the needs of the person on the autism spectrum, and the needs of society. The most frequent needs were informational and management of behavioral difficulties. In the resources, the most frequently used strategies were religious beliefs and informal support seeking. It is essential to address the quality of parents-grandparents' relationships, and include grandparents in intervention programmes, as a way of addressing grandparents' needs.
祖父母在患有自闭症谱系障碍的儿童和青少年家庭中扮演着不同的角色。他们经常参与对患有自闭症谱系障碍的人的照料任务，为家庭提供情感和实际支持。然而，尽管他们频繁参与且在家庭中角色重要，但很少有研究探讨这些祖父母的经历，尤其是在西班牙和南欧背景下。本研究探讨了有一个患有自闭症谱系障碍的孙辈所带来的影响和需求，以及祖父母拥有并用于应对出现的困难的资源。对17位患有自闭症谱系障碍的儿童和青少年的祖父母进行了半结构化访谈。我们对影响进行了编码可靠性主题分析，并对祖父母的需求和资源进行了定量内容分析。结果表明与影响相关的三个主要方面：个人成长、想帮忙却无能为力，以及在三个层面遭受痛苦：为自己、为子女和为孙辈。祖父母在四种情况下察觉到需求：他们自己的需求、核心家庭的需求、患有自闭症谱系障碍的人的需求以及社会的需求。最常见的需求是信息需求和行为困难管理。在资源方面，最常用的策略是宗教信仰和寻求非正式支持。解决父母与祖父母关系的质量问题，并将祖父母纳入干预项目，以此满足祖父母的需求至关重要。
