"How I Can Help Me": Self-Care Priorities and Structural Pressures Among Black Older Adults With Diabetes.

BACKGROUND AND OBJECTIVES: Disparities in type 2 diabetes mellitus (diabetes) represent an ongoing public health challenge. Black older adults are at high risk of diabetes and diabetes' complications. Diet, physical activity, and medication can control these risks, yet disease rates remain elevated. Utilizing an intersectionality framework, we seek to extend understanding of the social dimensions of diabetes through an examination of the diabetes self-care process from the perspective of Black older adults. RESEARCH DESIGN AND METHODS: This project involved a thematic analysis of diabetes illness narrative interviews with Black participants (N = 41) in our National Institute on Aging-funded study of diabetes. In a narrative approach, the participant communicates the significance of actions and events. RESULTS: The findings suggest that diabetes self-care involves interconnected struggles across four domains of care: (1) multimorbidity management, (2) financial well-being, (3) family support, and (4) formal health care. DISCUSSION AND IMPLICATIONS: Black older adult self-care reflects an active process of pursuing meaningful social goals and critical health needs. An intersectional framework, however, reveals the ongoing histories of inequity that shape this process. Further intervention to address the racist policies and practices found in Black older adults' communities and clinical care is needed to make true progress on diabetes disparities.

The Telemedicine for Patients With Inflammatory Bowel Disease (TELE-IBD) Clinical Trial: Qualitative Assessment of Participants' Perceptions.

BACKGROUND: Inflammatory bowel disease (IBD), comprising Crohn disease and ulcerative colitis, affects 1 to 3 million people in the United States. Telemedicine has shown promise in IBD. The objective of this study, telemedicine for patients with IBD (TELE-IBD), was to compare disease activity and quality of life (QoL) in a 1-year randomized clinical trial of IBD patients receiving telemedicine versus standard care. Treatment groups experienced improvements in disease activity and QoL, but there were no significant differences between groups. Study adherence to the text-based intervention was less than 80%, the targeted goal. OBJECTIVE: To understand adherence to remote monitoring, the goal of this qualitative assessment was to obtain TELE-IBD trial participants' perceptions, including their recommendations for future monitoring. METHODS: In this study, patients attending 3 tertiary referral centers with worsening IBD symptoms in the previous 2 years were eligible for randomization to remote monitoring via SMS text messages (short message service, SMS) every other week, weekly, or standard care. Participants (n=348) were evenly enrolled in the treatment groups, and 259 (74.4%) completed the study. For this study, a purposive sample of adherent (N=15) and nonadherent (N=14) patients was drawn from the TELE-IBD trial population. Adherence was defined as the completion of 80% (278/348) or more of the weekly or every other week self-assessments. Semistructured interviews conducted by phone surveyed (1) the strengths and benefits of TELE-IBD, (2) challenges associated with using TELE-IBD, and (3) how to improve the TELE-IBD intervention. Interviews were recorded, professionally transcribed, and coded based on a priori concepts and emergent themes with the aid of ATLAS.ti, version.7 qualitative data analysis software. RESULTS: Participants' discussions centered on 3 elements of the intervention: (1) self-assessment questions, (2) action plans, and (3) educational messages. Participants also commented on text-based platform, depression and adherence, TELE-IBD system in place of office visit, and their recommendations for future TELE-IBD systems. Adherent and nonadherent participants prefer a flexible system that is personalized, including targeted education messages, and they perceive the intervention as effective in facilitating IBD self-management. CONCLUSIONS: Participants identified clear benefits to the TELE-IBD system, including obtaining a better understanding of the disease process, monitoring their symptoms, and feeling connected to their health care provider. Participants' perceptions obtained in this qualitative study will assist in improving the TELE-IBD system to be more responsive to patients with IBD.

Ascribed Meaning of Disease Control: Perspectives of Patients With Type 2 Diabetes.

BACKGROUND: Contemporary treatment of type 2 diabetes mellitus (hereafter diabetes) heavily emphasizes "diabetes control," largely defined by measurable blood glucose parameters. Little is known about how people living with the condition themselves define diabetes control within the lived experience of their disease. METHODS: As part of a qualitative study investigating the subjective construction of diabetes, 83 in-depth interviews were conducted with African American and non-Hispanic white older adults. Using content analysis, 4237 pages of narrative data were analyzed to explore how informants conceptualized diabetes control. FINDINGS: Four themes emerged from the data, describing varied understandings of diabetes control: (a) blood sugar regulation, (b) practicable treatment adherence, (c) bodily experience, and (d) degree of pharmaceutical need. Findings demonstrate that among persons with diabetes, the term diabetes control is multifaceted. CONCLUSION: While clinical guidelines have established target blood glucose parameters as the standard indicator of diabetes control, persons with diabetes conveyed varied and diverse meanings situated within personal experiences. To foster empathetic and collaborative care, health-care providers tending to this population may consider integrating the emergent themes into communicative and treatment approaches.

Understanding the Subjective Experience of Medication Adherence for Older Urban African Americans With Type 2 Diabetes and a History of Illicit Drug Addiction.

OBJECTIVE: African Americans experience high rates of type 2 diabetes mellitus (T2D). Self-management strategies, such as medication adherence, are key to mitigating negative T2D outcomes. This article addresses a gap in the literature by examining the intersections of drug abuse histories and medication adherence among urban, older African Americans with T2D. METHOD: In-depth interview data were collected as part of a larger ethnographic study examining the subjective experience of T2D among urban older adults. Two representative focal cases were selected and thematic analysis performed to illustrate how former illicit drug addicts perceive prescription medication usage. RESULTS: Narratives reveal that participants are displeased about having to take prescription drugs and are making lifestyle changes to reduce medication usage and maintain sobriety. DISCUSSION: Previous drug abuse not only complicates medication adherence but is also a significant part of how older African Americans who are former drug users frame their understanding of T2D more broadly.

Diabetes and the Motivated Patient: Understanding Perlocutionary Effect in Health Communication.

Health care providers (HCP) understand the importance of keeping patients motivated but may be unaware how their words may have unintended negative effects upon their patient's lives. People with diabetes report being told by their HCP that they are "cured" or that they are praised for strides made in weight loss and/or lowered blood glucose, and interpret these messages in unexpected ways. For this paper, we focus upon one case to illustrate the depth and nuance of the patient-provider communication as it emerged within a larger interview-based ethnographic study. Audio-recorded interviews and transcriptions were analyzed discursively. Discourse analysis reveals the ways ideology affects how the patient responds to HCP's utterances and how this affects diabetes self-care. Findings indicate significant perlocutionary effects upon health outcomes, varying both positively and/or negatively. This study points to the importance of carefully considering the power of words and whenever possible knowing the patient's ideological orientation to their world. HCPs should be explicit and deliberate with their communication. Sensitization to the various ways patients hear and react to messages in a clinical setting may lead to improved health outcomes, especially for those with chronic health conditions such as diabetes mellitus.

Successful Aging Among African American Older Adults With Type 2 Diabetes.

OBJECTIVES: Rowe and Kahn's concept of successful aging remains an important model of well-being; additional research is needed, however, to identify how economically and socially disadvantaged older adults experience well-being, including the role of life events. The findings presented here help address this gap by examining the subjective construction of well-being among urban African American adults (age ≥ 50) with Type 2 diabetes. METHOD: As part of the National Institute on Aging-funded Subjective Experience of Diabetes among Urban Older Adults study, ethnographers interviewed African American older adults with diabetes (n = 41) using an adaptation of the McGill Illness Narrative Interview. Data were coded using an inductively derived codebook. Codes related to aging, disease prognosis, and "worldview" were thematically analyzed to identify constructions of well-being. RESULTS: Participants evaluate their well-being through comparisons to the past and to the illnesses of friends and family. Diabetes self-care motivates social engagement and care of others. At times, distrust of medical institutions means well-being also is established through nonadherence to suggested biomedical treatment. DISCUSSION: Hardship and illness in participants' lives frame their diabetes experience and notions of well-being. Providers need to be aware of the social, economic, and political lenses shaping diabetes self-management and subjective well-being.

Stigma and Discontinuity in Multilevel Senior Housing's Continuum of Care.

PURPOSE OF THE STUDY: This article presents data from 2 qualitative studies, confirming what gerontologists observed 30 years ago. Multilevel senior housing residents experience stigma and distress in an environment where people are grouped by levels of functioning. DESIGN AND METHODS: Qualitative, interview-based (N = 367) studies were conducted in senior housing settings offering multiple levels of care (N = 7). Analyses involved revisiting coded narrative data, ethnographers' field-based knowledge, and identification of pattern saturation. RESULTS: Residents and places reflecting the highest levels of care are stigmatized in a context where people are monitored for health changes and required to relocate. Consequently, residents self-isolate, develop a diminished sense of self, and hide health and cognitive conditions out of fear of relocation. IMPLICATIONS: Developers, operators, staff, and potential residents need to recognize the personal and social challenges typically experienced even in within-site relocation. It is important to rethink the predominant model of senior housing that requires residents with changing needs to move and adapt to the setting.

The facade of stability in assisted living.

OBJECTIVES: The study sought to identify the varied types of change arising from internal and external influences in assisted living (AL) settings, expanding upon the literature's limited focus on resident decline and staff turnover and clarifying the importance of changes to life and work there. METHOD: This analysis employed qualitative interviews and observations from 4 studies involving 17 ALs to identify elements of change largely absent from the literature. Case material identified by the research team members relating to persons, groups, and settings exemplifying typical changes, as well as variations across settings, are presented. RESULTS: Multiple domains of AL change were identified, to include those in: (a) the external economic or competitive environments; (b) ownership, management, or key personnel; and (c) physical health or cognition of the aggregate resident population. In many cases, the changes influenced residents' satisfaction and perceived fit with the AL environment. DISCUSSION: Change of many types is a regular feature of AL; many changes alter routines or daily life; raise concerns of staff, residents, or families; or modify perceptions of residential normalcy. Environmental gerontology should more often extend the environment to include the social and interpersonal characteristics of collective living sites for elders.

Baby Boomers in an active adult retirement community: comity interrupted.

PURPOSE OF THE STUDY: This article explores a clash between incoming Baby Boomers and older residents in an active adult retirement community (AARC). We examine issues of social identity and attitudes as these groups encounter each other. DESIGN AND METHODS: Data are drawn from a multiyear ethnographic study of social relations in senior housing. Research at this site included in-depth, open-ended interviews (47), field notes (25), and participant observation in the field (500 hr). Research team biweekly discussions and Atlas.ti software program facilitated analysis. FINDINGS: We begin with a poignant incident that has continued to engender feelings of rejection by elders with each retelling and suggests the power and prevalence of ageism in this AARC. We identify three pervasive themes: (a) social identity and image matter, (b) significant cultural and attitudinal differences exist between Boomers and older residents, and (c) shared age matters less than shared interests. IMPLICATIONS: Our data clearly show the operation of ageism in this community and an equating of being old with being sick. The conflict between these two age cohorts suggests that cohort consciousness among Boomers carries elements of age denial, shared by the older old. It also challenges the Third Age concept as a generational phenomenon.

The Vernacular Landscape of Assisted Living.

This article is an exploration into the vernacular landscape of Assisted Living (AL), a conceptual idea borrowed from cultural geographer J.B. Jackson, which distinguishes formalized, planned space from those spaces which are unintended and often created spontaneously--vernacular. Based upon three large-scale, multi-year ethnographic studies in Maryland, we consider some of the ways people who live in AL relate to and respond to the built environment, at times subverting the intended purpose of design to make it their own. The conflict that often ensues over both planned and vernacular public and private space, we propose is ultimately the product of living within an environment that is both someone's home as well as a place of business, whose job it is to keep people safe. Within this physical context of vernacular private and public spaces, this article enriches understandings about the way autonomy and privacy expresses itself.

The Emerging Role of Health Care Supervisors in Assisted Living.

Historically, the assisted living (AL) industry has promoted a social, non-medical model of care. Rising health acuity of residents within AL, however, has brought about the need for providing increased health care services. This article examines the key staff role related to health care provision and oversight in AL, described as the health care supervisor. It briefly describes individuals in this role (N = 90) and presents their perspectives regarding their roles and responsibilities as the health care point person within this non-medical environment. Qualitative analyses identified four themes as integral to this position: administrative functions, supervision of care staff, provision of clinical and direct care, and clinical care coordination and communication. The article concludes with recommendations for AL organizations and practice of the emerging health care supervisor role in AL.

Lessons from the Arkansas Cash and Counseling program: how the experiences of diverse older consumers and their caregivers address family policy concerns.

This paper addresses four family policy questions that policy makers often ask about consumer-directed services, examining issues such as quality, suitability, and fraud and abuse. Responses to these questions evolved from the experiences of diverse elder consumers and their caregivers who participated in IndependentChoices, the Arkansas site of the Cash and Counseling Demonstration and Evaluation (CCDE) program. Building on CCDE evaluation survey data, this analysis of in-home interviews with participants discussing their experiences of receiving, giving, and managing care demonstrates how the program allows consumers choices so they receive the services they want. At the same time, program flexibility allows policy makers to safeguard both consumers and program resources through the use of supports such as representatives, state consultants, and fiscal intermediaries. This article demonstrates how the Cash and Counseling model can address the needs of both consumers with diverse disabilities and policy makers.

An ethnographic study of stigma and ageism in residential care or assisted living.

PURPOSE: This study explored aspects of stigmatization for older adults who live in residential care or assisted living (RC-AL) communities and what these settings have done to address stigma. DESIGN AND METHODS: We used ethnography and other qualitative data-gathering and analytic techniques to gather data from 309 participants (residents, family and staff) from six RC-AL settings in Maryland. We entered the transcript data into Atlas.ti 5.0. We analyzed the data by using grounded theory techniques for emergent themes. RESULTS: Four themes emerged that relate to stigma in RC-AL: (a) ageism in long-term care; (b) stigma as related to disease and illness; (c) sociocultural aspects of stigma; and (d) RC-AL as a stigmatizing setting. Some strategies used in RC-AL settings to combat stigma include family member advocacy on behalf of stigmatized residents, assertion of resident autonomy, and administrator awareness of potential stigmatization. IMPLICATIONS: Findings suggest that changes could be made to the structure as well as the process of care delivery to minimize the occurrence of stigma in RC-AL settings. Structural changes include an examination of how best, given the resident case mix, to accommodate care for persons with dementia (e.g., separate units or integrated care); processes of care include staff recognition of resident preferences and strengths, rather than their limitations.

Symptom experience of dying long-term care residents.

OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assisted living (RC/AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents. DESIGN: After-death interviews. SETTING: Stratified random sample of 230 long-term care facilities in four states. PARTICIPANTS: Staff (n=674) and family (n=446) caregivers for dying residents. MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment. RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n=331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa=-0.043-0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care. CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more-effective palliation of symptoms near the end of life.

An observation of assisted living environments: space use and behavior.

Assisted living facilities have become increasingly popular for older adults needing assistance. They are intended to enable privacy and provide support, but the extent to which they do so, and the degree to which these relate to residents' needs, are unknown. This observational study of 1830 residents in 182 facilities indicates that, during the mid-afternoon, the majority of residents are awake (79%), and one-half (49%) are awake and in public spaces. Residents who are cognitively and functionally impaired are more likely to be in public spaces, but less likely to be engaged. Residents who are awake and alone in private spaces are less likely to be impaired, but more likely to have medical conditions. Thus, residents needing more oversight seem to be positioned to obtain that oversight.

Case histories of six consumers and their families in Cash and Counseling.

OBJECTIVE: To examine how the lives of consumers and their caregivers were affected by making choices and controlling their own resources with the cash option, this paper focuses on six case studies from the Cash and Counseling Demonstration Program. DATA SOURCES: Twenty-one consumers, caregivers, and state consultants were interviewed about their experiences in the program. STUDY DESIGN: The data come from a larger study of over 200 interviews conducted from June 2000 to August 2004. Interview data were analyzed for themes about caregiving and program satisfaction. PRINCIPAL FINDINGS: Cash and Counseling benefited consumers and caregivers by allowing consumers increased continuity and reliability of care, increased ability to set hours of care, more satisfaction with how caregiving is offered and more satisfaction with the quality of care. CONCLUSIONS: The cash option allowed consumers to create, schedule, and manage their own model of care. Some consumers faced challenges in the program with paperwork, accounting, worries about receiving care, and some ineffective state consultants who could have been more helpful.

An empirical typology of residential care/assisted living based on a four-state study.

PURPOSE: Residential care/assisted living describes diverse facilities providing non-nursing home care to a heterogeneous group of primarily elderly residents. This article derives typologies of assisted living based on theoretically and practically grounded evidence. DESIGN AND METHODS: We obtained data from the Collaborative Studies of Long-Term Care, which examined 193 assisted living facilities in four states: Florida, Maryland, New Jersey, and North Carolina. By using mixture modeling, we derived typologies in five different ways, based on: structure; process; resident case-mix; structure and process; and structure, process, and resident case-mix. RESULTS: Although configurations of typologies varied as a function of criterion variables used, common themes emerged from different cluster solutions. A typology based on resident case-mix yielded a five-cluster solution, whereas a typology based on structure, process, and resident case-mix resulted in six distinct clusters. Medicaid case-mix/psychiatric illness and high resident impairment were two clusters identified by both strategies. IMPLICATIONS: Because of the wide variation in structure, residents, and services within assisted living facilities, typologies such as those described here may be useful in clinical practice, research, and policy. To the extent that public payment defines its own cluster, the potential for inequities in care merits careful attention.

Sociocultural aspects of transitions from assisted living for residents with dementia.

PURPOSE: Negotiating transitions and residential relocation are especially difficult for residents with dementia and their families. This article examined the decision-making process regarding retention or transfer of persons with dementia in assisted living facilities. DESIGN AND METHODS: Using an ethnographic approach, this study observed residents and facility life, and interviewed residents, staff, and family members in three assisted living facilities. RESULTS: Facility managers and administrators are pivotal figures in determining the timing of transitions and transitional care. Operating within the context of care requirements of dementia, they, the facility culture, and the family members' involvement in resident care mediate interpretations of and responses to change and decline, and ultimately influence decision making regarding retention or transfer. IMPLICATIONS: Transfer or retention may occur differently depending on whether managers are on- or off-site, the assisted living culture is dementia-friendly, and families are involved in care. Sensitizing assisted living managers and educating potential residents and family members to the importance of these factors may affect the eventual likelihood and timing of discharge.