RESUMO
One of the most understudied health disparity populations in the United States is the Deaf community, a sociolinguistic minority group of more than 500,000 individuals who communicate via American Sign Language. Research on Deaf health disparities is lacking due to inaccessible recruitment, sampling, and data collection procedures, as well as the fundamental disconnect between medical and cultural views of Deaf people. A potential starting place for addressing inaccessible research methods and mistrust of the biomedical research community is the careful reconsideration of the traditional informed consent process, often a Deaf individual's first point of contact with the research world. Yet, most Deaf individuals experience obstacles to engaging in informed consent due to differences in language and development compared to hearing individuals. In response to these issues, our team led a three-phase, formative, community-engaged approach to adapt the informed consent process and train research staff in the updated method so that all required components are properly communicated and understood. The goals of our work were to promote Deaf engagement in research about the Deaf community, increase the number of Deaf individuals who participate in general population biomedical research, and generalize our findings to improve research accessibility for the general population.
Assuntos
Participação da Comunidade , Surdez/psicologia , Consentimento Livre e Esclarecido , Adulto , Pesquisa Biomédica/ética , Pesquisa Biomédica/métodos , Participação da Comunidade/métodos , Participação da Comunidade/psicologia , Feminino , Grupos Focais , Humanos , Consentimento Livre e Esclarecido/psicologia , Masculino , Pessoa de Meia-Idade , Seleção de Pacientes/ética , Projetos Piloto , Pesquisadores/educaçãoRESUMO
One of the most understudied health disparity populations in the United States is the Deaf community-a sociolinguistic minority group of at least 500,000 individuals who communicate using American Sign Language. Research within this population is lacking, in part, due to researchers' use of methodologies that are inaccessible to Deaf sign language users. Traditional qualitative methods were developed to collect and analyze participants' spoken language. There is, therefore, a paradigm shift that must occur to move from an auditory data schema to one that prioritizes the collection and analysis of visual data. To effectively navigate this shift when working with Deaf sign language users, there are unique linguistic and sociopolitical considerations that should be taken into account. The current article explores these considerations and outlines an emerging method of conducting qualitative analysis that, we argue, has the potential to enhance qualitative researchers' work regardless of the population of focus.
Assuntos
Pesquisa Participativa Baseada na Comunidade/organização & administração , Pessoas com Deficiência Auditiva , Pesquisa Qualitativa , Projetos de Pesquisa , Competência Cultural , Letramento em Saúde , Humanos , Política , Língua de Sinais , Fatores Socioeconômicos , Estados UnidosRESUMO
In recent decades the average age of becoming a parent has increased, the rate of teen pregnancies has decreased, and a new developmental period of emerging adulthood is marked by diverse pathways into adulthood. Today, those who become parents in young adulthood (18-24 years old) and their children may be vulnerable to poor outcomes observed in teen parents (13-19 years old) of previous generations. Young adults with serious mental health conditions (SMHC) who encounter additional challenges navigating young adulthood and tend to parent earlier than their peers may be at particularly increased risk of poor outcomes. To date, little research has been done to understand the experiences of young adult parents, especially those with SMHC. This study describes themes from qualitative interviews with 18 young adults with SMHC in the United States who became parents before the age of 25. Life story narrative interviews, conducted mostly by young adults with lived experience, asked participants to describe their parenting and mental health experiences and their school, training, and work experiences. Participants described the challenges of simultaneously parenting young children and managing a mental health condition, experiences of discrimination, and fear of future discrimination related to their mental health condition. However, parents also expressed that their children motivated them to maintain recovery and build a good life for their family. This is the first study to qualitatively explore the experiences of young adult parents with SMHC. While many of these findings align with prior qualitative research on mothers with mental illness, by exclusively focusing on individuals who become parents earlier than their peers and including father experiences, this research adds to our understanding of how individuals simultaneously navigate parenting and managing a serious mental health condition. These findings should inform larger-scale research studies on the experiences and outcomes of young adults with SMHC who become parents in their late teens or early twenties. A better understanding of their experiences should inform public mental health services that incorporate parenting as an important element of an individual's personal recovery model.