Suchergebnisse

AbstractBackgroundAdults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion.MethodWe describe our multi‐phased process, inclusive of community‐engagement, to develop a self‐report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies.ResultsWe identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies.ConclusionsResearchers can promote first‐person decision‐making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety.

AbstractPractitioners in youth settings experience life on the ground as a tumble of events, shaped by a confluence of youth needs, institutional expectations, and other inputs. The quality of the setting is determined in part by practitioners' expertise in shaping and responding to these events. The situations that arise in practice, and how staff respond, can be turning points, good or bad, in youths' experience of the setting. They can also be opportunities for youth development. This article examines the wide‐ranging events, situations, or "dilemmas of practice" that occur in the daily life of youth development programs. Research shows that these varied situations are shaped by the ecology of diverse people and systems that influence the setting. They involve considerations that may entail everything from the psychology of different youth, to how parents from a cultural group think, to the dynamics of government systems. Expert youth practitioners, it is found, are able to identify more considerations than novices in these situations, and they possess a wider repertoire of responses. They also formulate more responses that are youth centered and address multiple considerations. Expertise involves being able to balance diverse concerns, including how to create and sustain conditions for the development of young people. Researchers can contribute by helping us better understand this array of situations and how experts respond. Improvement in the quality of youth settings can be achieved through greater knowledge of the tumble of events that occur and by helping train practitioners in skills for responding to it.