Assisted Living Residents’ Informal Care Convoys: A Focus on Non-Traditional Helpers

Thursday, 19 July 2018: 11:10
Oral Presentation
Molly M PERKINS, Emory University, USA
Candace KEMP, Georgia State University, USA
Mary BALL, Emory University, USA
Elisabeth O BURGESS, Georgia State University, USA
Andrea FITZROY, Georgia State University, USA
Carole HOLLINGSWORTH, Georgia State University, USA
Broad social and demographic trends increase the likelihood that many assisted living (AL) residents will lack traditional informal helpers (i.e., children and spouses). Yet, non-traditional support arrangements are not well understood. To address this knowledge gap, we present an analysis of qualitative data from a 5-year NIA-funded study (R01AG044368-01A1) guided by the “Convoy of Care” model (Kemp, Ball, and Perkins 2013). Using grounded theory methods and an ethnographic approach involving 2,224 hours of participant observation and informal and formal interviewing with residents and formal and informal caregivers over two years in 4 AL communities in Georgia, we examine residents’ care arrangements when traditional helpers are absent. Our aims are: 1) to understand the structure, function, and adequacy of non-traditional networks; and 2) to identify the factors that influence how they operate. Twenty-five residents (13 White and 12 African Americans aged 42-96 years) had informal networks led by distant kin, friends, volunteers, and others. These networks typically were small and often vulnerable (e.g. helpers had personal or health challenges of their own). Each resident experienced some marginality (social, economic, cultural) that influenced their care, quality of life, and ability to age in place. Four intersecting human conditions shaped residents’ and other stakeholders’ capacity to negotiate marginality which we define in terms of symbolic capital (material, human, social, and psychological; see Perkins et al., 2012). Core contexts in which participants negotiated marginality included situational contexts (objective conditions of participants’ lives and the ways in which they defined various situations they encountered); facility contexts (e.g., model of operation and aging in place philosophy); cultural and community contexts (e.g., Jewish ethnicity, small town, African American, rural); and larger socioeconomic, political, and regulatory contexts. Findings have implications for interventions aimed at strengthening residents’ informal care networks.