Multi-caregiving among African- American grandmothers: The context of their lives Multi-caregiving among African- American grandmothers: The context of their lives Dana L. Carthron, PhD, RN 1 Donald E. Bailey, PhD, RN 2 Ruth Anderson, PhD, RN, FAAN 2 1 Winston-Salem State University, Division of Nursing 2 Duke University, School of Nursing

Background Many African-American grandmothers raising their grandchildren are also vulnerable to chronic illness. 1 in 4 African-American women over 55 have diabetes Little is known about the context in which they raise their grandchildren and manage their own health.

Purpose To understand: ◦ the context within which these grandmothers are self-managing their diabetes and ◦ the challenges that arise from the context.

Framework Adaptive Leadership Framework developed by Heifetz & Linsky

Methodology Exploratory, longitudinal study Mixed methods ◦ Survey and Interview every 2 months Six African-American primary caregiving grandmothers with diabetes in North Carolina

Findings Multiple challenges were identified from the life context of these grandmothers. ◦ Two main themes were defined as technical challenges ◦ Three main themes (with subthemes) were defined as adaptive challenges.

Technical Challenges Lack of awareness of resources Legal custody of the grandchildren Financial assistance I couldn’t get food stamps; I couldn’t get no TANF. They told me to get TANF you got to be working and if I’m workin’ I don’t need TANF. I couldn’t get nothin’.

Adaptive Challenges Interfamily chaos Multicaregiving ◦ Physical/Emotional ◦ Financial ◦ Community ◦ Spiritual “Superwoman Schema” (Self-silencing & self-sacrifice)

Interfamily chaos Incarceration of grandchild’s biological parent Special events increased worry and strain for some participants. “It’s like in the sinkin’ hole, dealing with all this. I mean, I don’t know… She’s 44 - the boy in prison’s 45. Um, I have never in my life seen anything like this.”

Multicaregiving Physical/emotional caregiving “Sometimes at the end of the day I’m just too tired to do anything for me…check my blood sugar, whatever. I just exhausted.”

Multicaregiving Financial obligations to caregiving roles “You know I can’t always afford, because I’m taking care of them family members, $30 for a refill.”

Multicaregiving Community Spiritual Caregiving “I’m very active in the community and my church and all those things, so there’s a couple days a week that I don’t eat right.”

“Superwoman Schema” Self-silencing Self-sacrifice I don’t fall apart in front of him [son] & I don’t fall apart in front of her [granddaughter]. And I very seldom show emotions in front of them. I think that’s why I don’t focus on my illnesses, because if I focused on ‘em, they would. “My back’s been hurtin’ for four months and I waited until I couldn’t do anything else about it. I just didn’t have time or the money to go to the doctor.”

Discussion Life context gives rise to primarily adaptive challenges that are difficult to resolve and for which providers will not have ready solutions Both technical challenges and adaptive challenges act as barriers to diabetes self- care Challenges will remain unresolved without Adaptive Work

Discussion These women are NOT non-compliant!!! Self-management is embedded in the context of these grandmothers’ lives Providers must take time to LISTEN/WATCH for clues (adaptive challenges)

Future Research Expand these findings with larger sample Explore the concept of “Superwoman” Schema among African-American caregiving grandmothers. Develop tailored interventions for adaptive challenges ◦ Full family assessment ◦ Emphasizing that “Its not selfish to take care of self” ◦ Must be developed using an interdisciplinary team.

Acknowledgements John A. Hartford, Building Academic Geriatric Nursing Capacity (BAGNC) Program University of North Carolina, Chapel Hill Ethnicity, Culture and Health Outcomes Program

Thank You!!!