RESUMO
As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.
Assuntos
Transtorno Autístico , Pesquisa Participativa Baseada na Comunidade/métodos , Guias como Assunto , Participação dos Interessados , Adulto , Antropologia Cultural , Comportamento Cooperativo , Deficiências do Desenvolvimento , Feminino , Humanos , Deficiência Intelectual , Masculino , Gravidez , Pesquisadores , Sujeitos da Pesquisa , Papel (figurativo) , Violência/prevenção & controleRESUMO
Over the past 2 years 44 patients with pituitary tumors underwent transsphenoidal resection. A specialized team performed the procedure so as to optimize the results. 20 patients had nonsecreting macroadenomas and 24 suffered from hormone-secreting adenomas. All who presented with visual deterioration had improved vision after operation. Only 3 developed new endocrine deficits following surgery, while in 4 with invasive prolactinoma vision improved following surgery but hyperprolactinemia persisted. 8 of 11 patients with acromegaly were cured, while in the other 3, who had invasive tumors, growth hormone decreased significantly. 8 of 9 patients with Cushing's disease were cured. In only 1 case did a permanent complication, diabetes insipidus, occur; there was no mortality. These results demonstrate the efficacy of the procedure and the advantages of a dedicated team.