Participation Type

Panel

Session Title

Session 4.05 (Women and Gender) Many Mountains to Climb: Women’s Personal and Familial “Journeys” through Wellness and Illness in Southern Central Appalachia

Session Abstract or Summary

Examining the complex lives, stories, and roles of women living in Southern Central Appalachia, the panel participants highlight diverse female voices about the often arduous journeys women take through the terrains of personal and familial wellness and illness. Covering results from four (4) separate data-driven studies, panelists and study authors draw on the words and narratives of regional women who have encountered everyday wellness choices, healthcare decisions, and chronic illnesses. What emerges across these provocative panel presentations is that during wellness and illness journeys women of Southern Central Appalachia may act as guides, protectors, caregivers, providers, authorities, survivors. In effect, the female participants in the featured studies carry their own weighted experiences while also carrying the weighted experiences of others (e.g., family members). Drawing on qualitative methodologies, the panel presenters prominently feature women’s voices. Subsequently, the panelists reveal the dynamic roles and personal journeys women of the Appalachian region play within families and relationships, as well as their own lived experiences. The research participants share stories and tales of being women, daughters, mothers, and caregivers, facing issues of disease and well-being.

Kelly A. Dorgan will moderate the session.

Presentation #1 Title

Communicating about End of Life through Digital Storytelling: Perspectives from Appalachian Women Living with HIV/AIDS

Presentation #1 Abstract or Summary

Background. This project highlights the use of digital storytelling (DST) as a method to communicate about advanced care planning wishes and challenges faced by Appalachian women living with HIV/AIDS. DST is an expressive medium of digital media production consisting of first-person narrative, pictures, movies and music to share a life story. Methods. This presentation features secondary data from a fixed, sequential mixed methods study aimed at assessing End-of-Life (EOL) care and service needs across physical, psychological, social, spiritual/religious and ethical/legal domains. These data facilitated the construction of a composite digital story, using student actors who portrayed different narratives regarding EOL. DSTs were developed over three sessions. In the first session, actors were given scenarios based on qualitative data. Session two consisted of refining the story narrative and story-lining (matching pictures/video with the narrative) as well as an introduction to the iPad and iMovie software. Session three focused on combining sources of media imagery/sound into a composite digital story. Results. Two DSTs created by female actors representing stories derived from qualitative data feature the cultural challenges, EOL needs, and stigma faced by women living with HIV/AIDS in Appalachia. These technological narratives have allowed us to consider this innovative means of data collection and communication as a both a research method and intervention for raising awareness about EOL needs among this unique aggregate. Significance. This project advances scientific knowledge using DST as an innovative, technological, and culturally-congruent avenue for enhancing communication and hearing the voices of women living with HIV/AIDS in Appalachia.

At-A-Glance Bio- Presenter #1

Biosketch (Presenter 1). Sadie Hutson is an Associate Professor at the University of Tennessee-Knoxville. Her research trajectory focuses on the study of chronic illness and health disparities among rural and underserved communities.

Presentation #2 Title

Meal Memories: Women Navigating Family Well-being in Foodwork

Presentation #2 Abstract or Summary

Background. Research on women’s experiences and perceptions of family foodwork remain under-explored. This paper emerged from grant-funded research that examined women’s perceptions and experiences as they relate to family meals.

Methods. Focus group data was collected from thirty-five women in Northeast Tennessee. Women ranged in age from 18-55 years and, combined, mothered 54 children, over half of whose ages ranged from 1-5 years. Discussion was facilitated by a semi-structured moderator guide that asked about: 1) family dinners while growing up; 2) family dinners with their own children and families; and 3) whether they were interested in their meal experiences being different in any way and if so, how.

Results. Emerging from the data was a major theme of memories of meals past. Such memories functioned as points of continuity and change for these women as they attended to family well-being through food labor. Both the women’s experiences growing up and the experiences of their partners functioned as access points for determining what constitutes not only “family meal,” but also “family” itself. Meal memories focused the women’s meal provision options by clarifying whether to reproduce family of origin practices, redirect them, or sever them.

Significance. As families are increasingly encouraged to focus on family meals as a primary parenting method for monitoring children and attending to their well-being, women are likely are likely to feel the weight of child and familial outcomes more than men and more than they have in the past fifty years.

At-A-Glance Bio- Presenter #2

(Presenter 2). Amber E. Kinser is Professor & Chair of Communication & Performance at East Tennessee State University. Her work focuses a feminist lens on family communication, with a specialized focus on motherhood.

Presentation #3 Title

"I Just Had to Figure Out a Way to Tell Her Real Nonchalantly:” Navigating Cancer Communication in the Mother-Daughter Relationship

Presentation #3 Abstract or Summary

Background. This study (part of a larger grant-funded omnibus study) examines how female cancer survivors in Southern Central Appalachia communicate with their mothers regarding their own cancer diagnosis.

Methods. Kathryn Duvall, along with Kelly Dorgan (primary investigator) and Sadie Hutson (co-principle investigator), collected the stories of 29 women cancer survivors from Northeast Tennessee and Southwest Virginia through story circles and in depth interviews.

Results. Many women of this study reported close relationships with their families, and especially their mothers. These women reported challenges with discussing their cancer diagnosis and treatment with their mothers. Women reported a desire to 1) protect their mothers, 2) not cause additional worry, and 3) keep their mothers from not feeling guilt for passing along a cancer gene. They tend to choose protective buffering (Zhang & Simminoff, 2003) when communicating about cancer with their mothers.

Significance. This paper explores how women communicatively navigate communicating about cancer with mothers and further explores the cancer experience in Southern Central Appalachia.

At-A-Glance Bio- Presenter #3

(Presenter 3). Kathryn L Duvall is an Assistant Director of Academic Services for TRIO-Student Support Services at East Tennessee State University. She specializes in studying cancer communication in Appalachia.

Presentation #4 Title

Mothers of Southern Central Appalachia: Family Guides through Health, Illness, and Wellness

Presentation #4 Abstract or Summary

Background. This study (part of a larger grant-funded omnibus study) examines the roles of mothers in Southern Central Appalachia regarding family health communication.

Methods. This presentation is based on a secondary analysis (Thorne, 1994) of existing qualitative data sets from two (2) previous studies of women living in Southern Central Appalachia. In the first study, Kelly Dorgan (primary investigator), Sadie Hutson (co-principle investigator), and Kathryn Duvall (researcher) collected the stories of 29 women cancer survivors from Northeast Tennessee and Southwest Virginia via a mixed methods approach. In the second study, Sadie Hutson (primary investigator) and Kelly Dorgan (co-investigator) investigated communication and cultural issues that may influence HPV and HPV vaccine perceptions and uptake behaviors in the region. We recruited 38 women between 18-50 years to participate in a single individual interview or focus group session.

Results. The secondary analysis has yielded preliminary results about the role of “mother” in health communication within family systems. These results challenge us to reconceptualize traditional characterizations of the “Appalachian Mother.” The role of mother as related to family health communication is a complex one. Specifically, there are “many mother” roles, including informational, instrumental, and emotional. Ultimately, women who identify as mothers appear to serve as decision guides, informational agents and health communication specialists within families.

Significance. This paper further explores the illness and wellness in Southern Central Appalachia, as well as the question of “Appalachian distinctiveness.”

At-A-Glance Bio- Presenter #4

(Moderator & Presenter 4). Kelly A. Dorgan is an Associate Professor at East Tennessee State University in the Department of Communication & Performance. She specializes in studying the intersection of health, illness, gender, and culture.

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Mar 28th, 8:00 AM Mar 28th, 9:15 AM

Communicating about End of Life through Digital Storytelling: Perspectives from Appalachian Women Living with HIV/AIDS

Background. This project highlights the use of digital storytelling (DST) as a method to communicate about advanced care planning wishes and challenges faced by Appalachian women living with HIV/AIDS. DST is an expressive medium of digital media production consisting of first-person narrative, pictures, movies and music to share a life story. Methods. This presentation features secondary data from a fixed, sequential mixed methods study aimed at assessing End-of-Life (EOL) care and service needs across physical, psychological, social, spiritual/religious and ethical/legal domains. These data facilitated the construction of a composite digital story, using student actors who portrayed different narratives regarding EOL. DSTs were developed over three sessions. In the first session, actors were given scenarios based on qualitative data. Session two consisted of refining the story narrative and story-lining (matching pictures/video with the narrative) as well as an introduction to the iPad and iMovie software. Session three focused on combining sources of media imagery/sound into a composite digital story. Results. Two DSTs created by female actors representing stories derived from qualitative data feature the cultural challenges, EOL needs, and stigma faced by women living with HIV/AIDS in Appalachia. These technological narratives have allowed us to consider this innovative means of data collection and communication as a both a research method and intervention for raising awareness about EOL needs among this unique aggregate. Significance. This project advances scientific knowledge using DST as an innovative, technological, and culturally-congruent avenue for enhancing communication and hearing the voices of women living with HIV/AIDS in Appalachia.