Search results for: Julianna F. Kamenakis

Authors: Steven J. Singer, Julianna F. Kamenakis, Allison R. Shapiro, Kimberly M. Cacciato

Abstract:

Communication and language are topics frequently studied among deaf children. However, there is limited research that focuses specifically on the communication and language experiences of Deaf-Disabled children. In this ethnography, researchers investigated the language experiences of six sets of parents with Deaf-Disabled children who chose American Sign Language (ASL) as the preferred mode of communication for their child. Specifically, the researchers were interested in the factors that influenced the parents’ decisions regarding their child’s communication options, educational placements, and social experiences. Data collection in this research included 18 hours of semi-structured interviews, 20 hours of participant observations, over 150 pages of reflexive journals and field notes, and a 2-hour focus group. The team conducted constant comparison qualitative analysis using NVivo software and an inductive coding procedure. The four researchers each read the data several times until they were able to chunk it into broad categories about communication and social influences. The team compared the various categories they developed, selecting ones that were consistent among researchers and redefining categories that differed. Continuing to use open inductive coding, the research team refined the categories until they were able to develop distinct themes. Two team members developed each theme through a process of independent coding, comparison, discussion, and resolution. The research team developed three themes: 1) early medical needs provided time for the parents to explore various communication options for their Deaf-Disabled child, 2) without intervention from medical professionals or educators, ASL emerged as a prioritized mode of communication for the family, 3) atypical gender roles affected familial communication dynamics. While managing the significant health issues of their Deaf-Disabled child at birth, families and medical professionals were so fixated on tending to the medical needs of the child that the typical pressures of determining a mode of communication were deprioritized. This allowed the families to meticulously research various methods of communication, resulting in an informed, rational, and well-considered decision to use ASL as the primary mode of communication with their Deaf-Disabled child. It was evident that having a Deaf-Disabled child meant an increased amount of labor and responsibilities for parents. This led to a shift in the roles of the family members. During the child’s development, the mother transformed from fulfilling the stereotypical roles of nurturer and administrator to that of administrator and champion. The mother facilitated medical proceedings and educational arrangements while the father became the caretaker and nurturer of their Deaf-Disabled child in addition to the traditional role of earning the family’s primary income. Ultimately, this research led to a deeper understanding of the critical role that time plays in parents’ decision-making process regarding communication methods with their Deaf-Disabled child.

Keywords: American Sign Language, deaf-disabled, ethnography, sociolinguistics

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Authors: Kimberly M. Cacciato, Steven J. Singer, Allison R. Shapiro, Julianna F. Kamenakis

Abstract:

This study examines the dynamics of communication among researchers and participants who have various levels of hearing, use multiple languages, have various disabilities, and who come from different social strata. This qualitative methodological study focuses on the strategies employed in an ethnographic research study examining the communication choices of six sets of parents who have Deaf-Disabled children. The participating families varied in their communication strategies and preferences including the use of American Sign Language (ASL), visual-gestural communication, multiple spoken languages, and pidgin forms of each of these. The research team consisted of two undergraduate students proficient in ASL and a Deaf principal investigator (PI) who uses ASL and speech as his main modes of communication. A third Hard-of-Hearing undergraduate student fluent in ASL served as an objective facilitator of the data analysis. The team created reflexive journals by audio recording, free writing, and responding to team-generated prompts. They discussed interactions between the members of the research team, their evolving relationships, and various social and linguistic power differentials. The researchers reflected on communication during data collection, their experiences with one another, and their experiences with the participating families. Reflexive journals totaled over 150 pages. The outside research assistant reviewed the journals and developed follow up open-ended questions and prods to further enrich the data. The PI and outside research assistant used NVivo qualitative research software to conduct open inductive coding of the data. They chunked the data individually into broad categories through multiple readings and recognized recurring concepts. They compared their categories, discussed them, and decided which they would develop. The researchers continued to read, reduce, and define the categories until they were able to develop themes from the data. The research team found that the various communication backgrounds and skills present greatly influenced the dynamics between the members of the research team and with the participants of the study. Specifically, the following themes emerged: (1) students as communication facilitators and interpreters as barriers to natural interaction, (2) varied language use simultaneously complicated and enriched data collection, and (3) ASL proficiency and professional position resulted in a social hierarchy among researchers and participants. In the discussion, the researchers reflected on their backgrounds and internal biases of analyzing the data found and how social norms or expectations affected the perceptions of the researchers in writing their journals. Through this study, the research team found that communication and language skills require significant consideration when working with multiple and complex communication modes. The researchers had to continually assess and adjust their data collection methods to meet the communication needs of the team members and participants. In doing so, the researchers aimed to create an accessible research setting that yielded rich data but learned that this often required compromises from one or more of the research constituents.

Keywords: American Sign Language, complex communication, deaf-disabled, methodology

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