"That's my brother": Perceptions of future involvement among Latino and non-Latino youth siblings of autistic individuals.
L’essentiel
Throughout their youth, non-autistic siblings of autistic individuals may begin considering their involvement in their autistic sibling's life, which may affect their well-being. However, there is little research on how expectations for future involvement differ across cultures. Understanding why and how youth siblings' expectations manifest may inform the design of family interventions that are appropriate for culturally-diverse samples. The present analysis examines how Latino and non-Latino youth siblings perceive their future supportive roles in their autistic sibling's life. Semi-structured qualitative interviews were conducted in English with 12 Latino and 9 non-Latino youth siblings (N = 21). Eligible families had at least one child diagnosed with autism and a non-autistic sibling between 8 and 17 years old. Audio-recorded interviews were transcribed verbatim and coded using a coding structure. Data were analyzed using applied thematic analysis and were both analyzed in aggregate and stratified by ethnic background. Two themes were identified: 1) expectations of evolving sibling roles and responsibilities into adulthood shape siblings' visions of their future involvement and 2) without family support, anxiety about the future pushes siblings into action or avoidance. Driven by a sense of duty, Latino siblings were more certain of a support role in their autistic sibling's life. Non-Latino siblings expressed more uncertainty and variability in their expectations for a future support role, feeling conflicted between prioritizing their autistic sibling or future family. These themes are consistent with literature emphasizing how cultural values, such as familism and individualism, shape caregiving attitudes and expectations. These findings may inform the design of culturally-responsive family interventions.
Synthèse détaillée
Résumé original
Throughout their youth, non-autistic siblings of autistic individuals may begin considering their involvement in their autistic sibling's life, which may affect their well-being. However, there is little research on how expectations for future involvement differ across cultures. Understanding why and how youth siblings' expectations manifest may inform the design of family interventions that are appropriate for culturally-diverse samples. The present analysis examines how Latino and non-Latino youth siblings perceive their future supportive roles in their autistic sibling's life. Semi-structured qualitative interviews were conducted in English with 12 Latino and 9 non-Latino youth siblings (N = 21). Eligible families had at least one child diagnosed with autism and a non-autistic sibling between 8 and 17 years old. Audio-recorded interviews were transcribed verbatim and coded using a coding structure. Data were analyzed using applied thematic analysis and were both analyzed in aggregate and stratified by ethnic background. Two themes were identified: 1) expectations of evolving sibling roles and responsibilities into adulthood shape siblings' visions of their future involvement and 2) without family support, anxiety about the future pushes siblings into action or avoidance. Driven by a sense of duty, Latino siblings were more certain of a support role in their autistic sibling's life. Non-Latino siblings expressed more uncertainty and variability in their expectations for a future support role, feeling conflicted between prioritizing their autistic sibling or future family. These themes are consistent with literature emphasizing how cultural values, such as familism and individualism, shape caregiving attitudes and expectations. These findings may inform the design of culturally-responsive family interventions.