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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.
Highlights
Autism is a neurodevelopmental disability characterized by difficulties in social communication and behaviours throughout the lifespan, affecting about 78 million people and their families worldwide (Lord et al, 2022)
As cultures differ with respect to who provides care and how family members interact, this review explores what cultural factors may influence the role of extended family members to guide the provision of support more effectively for families with autistic individuals
Our qualitative synthesis resulted in three themes, describing the types of support provided by extended family members; concerns relating to unhelpful or lack of support offered by extended relatives, and factors associated with the role played by extended relatives
Summary
Autism is a neurodevelopmental disability characterized by difficulties in social communication and behaviours throughout the lifespan, affecting about 78 million people and their families worldwide (Lord et al, 2022). There is a critical gap in understanding the diverse and often culturally shaped roles of extended family members in supporting autistic individuals and their parents across global contexts. The family-centred approach taken by services is strongly informed by family system theory, as it recognises the interrelatedness of family members and the importance of considering the needs of the entire family, rather than focussing solely on the child (Turnbull et al, 2010). This framework outlines key aspects of family dynamics, including characteristics, interactions, functions, and life cycle
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