Subject(s)
Emotions , Infant Behavior , Psychometrics/methods , Social Behavior , Translating , Child Behavior , Child Development , Child, Preschool , Humans , Infant , Psychometrics/standards , Sensitivity and Specificity , TaiwanABSTRACT
BACKGROUND: A child's diagnosis of autism impacts their whole family, in both positive and negative ways, that may be influenced by cultural beliefs. AIMS: We aimed to describe the experiences of mothers and typically-developing siblings of children with autism in two cultural contexts. METHODS: Fourteen mother-sibling dyads from Taiwan and the UK participated in semi-structured interviews. RESULTS: Whilst there were similarities in sibling experiences, a negative tone regarding the influence of autism was more evident in Taiwan, where families also cited societal judgement and cultural-specific expectations. In the UK, a more balanced tone was apparent: mothers emphasised educating and involving the siblings. It is speculated that UK siblings had a greater understanding of their parents' stress, leading to more adaptive family dynamics. Various types of support service were mentioned in the UK, whereas the availability of social services and support appeared to be relatively limited in Taiwan. IMPLICATIONS: Our data suggest that cultural context may have a significant impact on the responses of the family members. This is mediated by both differences in attitudes and traditions, and availability of resources. Support for family members needs to be sensitive to such cultural differences, as well as recognising positive experiences.
Subject(s)
Autistic Disorder/psychology , Disabled Children/psychology , Family Relations/psychology , Maternal Behavior , Siblings/psychology , Stress, Psychological , Adaptation, Psychological , Adult , Attitude to Health , Child , Ethnopsychology , Family Health , Female , Health Services Accessibility/statistics & numerical data , Humans , Male , Needs Assessment , Psychosocial Support Systems , Taiwan/ethnology , United Kingdom/ethnologyABSTRACT
PURPOSE OF REVIEW: A range of interacting factors/mechanisms at the individual, family, and wider systems levels influences siblings living in families where one sibling has autism. We introduce the Sibling Embedded Systems Framework which aims to contextualise siblings' experience and characterise the multiple and interacting factors influencing family and, in particular, sibling outcomes. RECENT FINDINGS: Findings from studies that have reported outcomes for siblings of children with autism are equivocal, ranging from negative impact, no difference, to positive experience. This is likely due to the complex nature of understanding the sibling experience. We focus on particular elements of the framework and review recent novel literature to help guide future directions for research and practice including the influence of culture, methodological considerations, and wider participatory methods. SUMMARY: The Siblings Embedded System Framework can be used to understand interactive factors that affect sibling adjustment and to develop clinically, educationally and empirically based work that aims to enhance and support sibling adjustment, relationships, and well-being in families of children with autism.
ABSTRACT
The influence of the broader autism phenotype (BAP) on the adjustment of siblings of children with autism has previously been researched mainly in Western cultures. The present research evaluated a diathesis-stress model of sibling adjustment using a questionnaire study including 80 and 75 mother-typically developing sibling dyads in Taiwan and the United Kingdom (UK). UK siblings reported elevated adjustment difficulties compared to the Taiwanese sample and to normative data. Whilst higher BAP levels were generally associated with greater adjustment difficulties, differences were found across cultures and respondents. Although significant diathesis-stress interactions were found, these were in the opposite direction from those predicted by the model, and differed across cultural settings. Implications for culturally-sensitive sibling support are considered.
