Li Jia-Ling, Washington-Nortey Melissa, Kifle Tsegereda Haile, Cotier Francesca, Hoekstra Rosa A
Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Clin Child Fam Psychol Rev. 2025 May 20. doi: 10.1007/s10567-025-00525-7.
Extended family members play an important role in meeting the care needs of autistic individuals, yet family support policies and practices often overlook this role. We aimed to synthesise qualitative research on the role played by extended family members in the lives of autistic individuals and their parents and identify cultural patterns. We searched eight databases and selected relevant studies through a two-stage screening process. We synthesised the results and discussions described in the selected studies using template analysis. The review included 42 studies (40 qualitative; 2 mixed methods), reporting on 1048 parents and 2140 grandparents. While aunts, uncles, and cousins were not direct participants, their roles were described in participants' narratives. Three main themes were developed: (1) types of support from extended family members, including emotional, financial, instrumental, and informational support; (2) unhelpful or lack of support from extended family members, including misunderstanding about autism, absence of support with caregiving, and negative attitudes and discriminatory behaviours against autistic individuals as well as their parents; (3) factors influencing the role of extended family members, including individuals, family unit, family interaction characteristics, and a journey towards acceptance and cultural influences. Novel findings on the influence of culture suggested in cultures highly valuing family interdependence, extended relatives play a more prominent support role, yet the emphasis on family reputation might hinder the acceptance of autism by extended relatives. Based on a family systems approach, we recommend priorities for intervention development and clinical practice to support the effective involvement of extended family members.
大家庭成员在满足自闭症患者的护理需求方面发挥着重要作用，但家庭支持政策和实践往往忽视了这一角色。我们旨在综合关于大家庭成员在自闭症患者及其父母生活中所起作用的定性研究，并确定文化模式。我们检索了八个数据库，并通过两阶段筛选过程选择了相关研究。我们使用模板分析综合了所选研究中描述的结果和讨论。该综述包括42项研究（40项定性研究；2项混合方法研究），报告了1048名父母和2140名祖父母。虽然姑姑、叔叔和表亲不是直接参与者，但他们的角色在参与者的叙述中有所描述。形成了三个主要主题：（1）大家庭成员提供的支持类型，包括情感、经济、工具性和信息性支持；（2）大家庭成员提供的无益或缺乏支持，包括对自闭症的误解、在照顾方面缺乏支持，以及对自闭症患者及其父母的消极态度和歧视行为；（3）影响大家庭成员角色的因素，包括个人、家庭单位、家庭互动特征，以及接受过程和文化影响。关于文化影响的新发现表明，在高度重视家庭相互依存的文化中，大家庭成员发挥着更突出的支持作用，但对家庭声誉的强调可能会阻碍大家庭成员对自闭症的接受。基于家庭系统方法，我们建议干预发展和临床实践的优先事项，以支持大家庭成员的有效参与。
