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Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects. [Members of the COST ESSEA Working Groups contributed to the writing of this paper.]

This paper focusses on coping strategies employed by children and adolescents with diagnosed short stature, assesses the impact of socio-demographic and clinical characteristics on coping, examines the relationship between coping and health related quality of life (QoL) and investigates the role of coping strategies in mediating the relationship between height and QoL. Coping with a disease (CODI) and quality of life in short stature youth (QoLISSY-QoL) questionnaires were completed by 137 short-statured children and adolescents between 8 and 18 years, participating in the crosssectional European QoLISSY study. Clinical and socio-demographic data were collected to examine differences in coping via variance and regression analyses, associations between CODI and QoLISSY were inspected using correlation and mediation analyses. Most frequently employed coping strategies in the CODI were 'Acceptance' and 'Wishful Thinking', with 'Emotional Reaction' used least. Significant effects of age, diagnosis and treatment status on coping strategies were detected. CODI scales 'Acceptance' and 'Distance' were associated with higher QoLISSY-QoL scores, 'Emotional Reaction' and 'Wishful Thinking' with lower scores. Coping strategies predicted 60 % of the QoLISSY-QoL variance. Relationships between height deviation and QoLISSY-QoL were mediated by the coping strategies of 'Wishful Thinking' and 'Distance'. Findings suggest that coping efforts vary with socio-demographic and clinical characteristics, that protective coping strategies in terms of QoL can be identified and that coping mediates the relationship between short stature and QoL. Future longitudinal research should focus on the adaptive function of coping in relation to QoL over time. [ABSTRACT FROM AUTHOR]

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