MARGARET M. MANOOGIAN, PHDFAMILY STUDIES

OHIO UNIVERSITY

Families Living with Diabetes in Appalachia:

The Transmission of Chronic Health Narratives in Families

Rationale

Diabetes: Incidence and OutcomesDiabetes: A Family DiseaseDiabetes: Intergenerational

TransmissionsDiabetes: Multiple LensesAppalachian Context

Narrative as a Theoretical Standpoint

Individuals rely on storytelling when trying to make sense

of expectations gone awry (Bruner, 1991)Illness Creates Narrative Sensemaking (Burke,

1954/1984).

Narrative Resources Maintain or Restore Continuity amidst Chaotic and Confusing Situations (Frank, 1995).

Stories Evolve over Time and Across Generations (McAdams, 2004)

Family Narratives: Create Meaning, Express Family Identity, and Influence Family Routines and Rituals (Fiese & Pratt, 2004; Pratt & Fiese, 2004; Kotkin & Zeitlin, 1983).

Project Overview

Dyad as Focus for Analysis

Recruitment: Diabetes Educators, Key Informants, Clinic Advertisement

First Phase: Focus Groups (N = 28)3 groups: Persons with T2DM3 groups: Family Support Members

Second Phase: Individual Dyad Interviews in one Appalachian county (N =

24)Third Phase: Individual and Family Interviews in 14

Appalachian counties (N =28)

Current residence in Appalachian OH & WV•Diagnosis of diabetes at least one year

•Family support member•18 years of age or older

Method

Design:Three Phases

a) Focus Groups

b) Interviews~Individual

c) Interviews~Individual~Family

Audio , video, & photographs

Methodology

Grounded Theory Importance of emergent design for

understanding new meanings, interpretations, and experiences of diabetes management in context of family

NarrativeTelling of the story—meanings are

communicated, identity presented, and diabetes management uncovered over time

Sample

N = 80 (White: 98%)

Persons with T2DM

22 women/18 men

Av. 62 years of age

Family Members

33 women/7 men

Av. 53 years of age

Dyad Relationships

Married (n = 24)Intergenerational (n = 14)

Sisters (n = 2)

Study FocusBecause T2DM is a family disease, which

frequently occurs within and across generations, health narratives that feature diabetes themes often are constructed and transmitted to younger family members.

In this qualitative study, we explore and offer a multigenerational understanding of how T2DM is perceived and managed over time in families.

Results

Highlight:

(a) How health legacies emerge out of a negotiated process that creates meaning and shapes family identity.

(a) How those with T2DM and their family members secure opportunities to respond to and reshape family health legacies for themselves and others.

(a) How generative urgency is expressedby passing on or refraining from sharing health legacies with future generations.

Diabetes Narratives as Health Legacies Shared Across Generations

Diabetes in the family tree

“. . . Now, my brothers and sister, my brothers, what, our youngest one’s the only one that doesn’t have it!”

Noted consequences for families

“. . . They lost limbs, you know? His brother and my grandma neither knew that they had the diabetes until they were in the hospital.”

Complex histories of diabetes across families

Diabetes Outcomes as Worse Case Scenarios

Benchmark that shaped participants’ views of their diagnoses and current family experiences of diabetes

“I’m concerned about it. You know, I think about it everyday. What would happen if they tell me I’m going blind or what, you know, but I try not to think about it . . . you know, I’ve got kids to raise.”

Diabetes as an Ambiguous Family Disease

Many puzzled over the reasons their members were more likely to be diagnosed and how it could be prevented from appearing in future generations.

“When our kids left, we both thought we were eating healthier, more vegetables and stuff like that. You know, less breads, less potatoes, but you know, here we are. “

Diabetes is an Expected but Unwelcome Intruder

“They say that I’m supposed to have it too. I don’t have it now, but I will in the future so I’m trying to take steps to avoid it but I don’t know.”

“To me, because my mom died from complications of diabetes, it was like somebody telling you, you have a cancer almost, you know.”

Home RemediesGendered Community of Care

“I think what my two daughters do. Just let me know that they’re concerned and that they care because if nobody cares about you, then it’s hard to care for yourself.”

Diabetes is Handled in Families in Our Own Ways

Diabetes Reshapes Family Identity in Ways We May not Like

Health legacies influenced a shift in family identity and culture

“We do like to eat. It’s a family that likes to eat. There’s no doubt about it. Food is a big part of this whole community…when there’s any kind of occasion, there’s major food.”

Renegotiating Generational Health Legacies

Current experiences shaped by family health narratives received from past generations

Choices as to how to pass them on

Receivers and translators of meaning

Crafting New Health Legacies for Future Generations

Health narratives may be motivated by generativity and desire to craft legacies for younger generations

Generativity Scripts--adults establish plans for how legacies are passed on to future generations.

Let’s Do Diabetes Differently in this Family

Craft future health legacies that look different

Teach family members new health routines

Health legacies did not come without frustrations

“That really upsets my wife when the kids don’t take it that seriously. And you really can’t tell anybody what to do, as much as you would like to.”

Focusing on Family Members with More Perceived Risks for T2DM

Specifically targeted family members who appeared at risk

“My biggest concern is Jenny. She’s the youngest one and she seems to be following in his [husband with T2DM] footsteps.”

Narratives as Health Legacies: Family Outcomes and Practice Implications

Content, messages, and ways narratives influence new construction of legacies are critical

Long complex family history of T2DM does not assure disease management

Embedded cultural messages

Messages needed that suggest diabetes is serious but it can be prevented, delayed, and managed—Co-creation with families and health careprofessionals