Jia-Ling Li, Melissa Washington-Nortey, Tsegereda Haile Kifle, Francesca Cotier, Rosa A. Hoekstra
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引用次数: 0
Abstract
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.
期刊介绍：
Editors-in-Chief: Dr. Ronald J. Prinz, University of South Carolina and Dr. Thomas H. Ollendick, Virginia Polytechnic Institute Clinical Child and Family Psychology Review is a quarterly, peer-reviewed journal that provides an international, interdisciplinary forum in which important and new developments in this field are identified and in-depth reviews on current thought and practices are published. The Journal publishes original research reviews, conceptual and theoretical papers, and related work in the broad area of the behavioral sciences that pertains to infants, children, adolescents, and families. Contributions originate from a wide array of disciplines including, but not limited to, psychology (e.g., clinical, community, developmental, family, school), medicine (e.g., family practice, pediatrics, psychiatry), public health, social work, and education. Topical content includes science and application and covers facets of etiology, assessment, description, treatment and intervention, prevention, methodology, and public policy. Submissions are by invitation only and undergo peer review. The Editors, in consultation with the Editorial Board, invite highly qualified experts to contribute original papers on topics of timely interest and significance.
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