Inclusion of people living with Alzheimer's disease or related dementias who lack a study partner in social research: Ethical considerations from a qualitative evidence synthesis.

BACKGROUND: Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer's disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. PURPOSE: The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. RESEARCH DESIGN/STUDY SAMPLE: We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. RESULTS: We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. CONCLUSIONS: Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.

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.

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.

Extending the Framework of Generativity Theory Through Research: A Qualitative Study.

PURPOSE OF THE STUDY: Based on ethnographic interviews, we discuss three ideas we believe will expand knowledge of older informants' thoughts about and representations of generativity. We adapt the notion of "dividuality" as developed in cultural anthropology to reframe ideas on generativity. The term dividuality refers to a condition of interpersonal or intergenerational connectedness, as distinct from individuality. We also extend previous definitions of generativity by identifying both objects of generative action and temporal and relational frameworks for generative action. DESIGN: We define 4 foci of generativity (people, groups, things, and activities) and 4 spheres of generativity (historical, familial, individual, and relational) based in American culture and with which older informants could easily identify. The approach outlined here also discusses a form of generativity oriented to the past in which relationships with persons in senior generations form a kind of generative action since they are involved in caring for the origins of the self and hence of future generative acts. These 3 elements of a new framework will allow researchers to pose critical questions about generativity among older adults. Such questions include (a) How is the self, as culturally constituted, involved in generative action? and (b) What are the types of generativity within the context of American culture and how are they spoken about? Each of the above points is directly addressed in the data we present below. METHODS: We defined these domains through extended ethnographic interviews with 200 older women. RESULTS AND IMPLICATIONS: The article addresses some new ways of thinking about generativity as a construct, which may be useful in understanding the cultural personhood of older Americans.

Older Women Discuss Planning for Future Care Needs: An Explanatory Framework.

OBJECTIVE: This study expands upon existing narrative data concerning health care preparation by developing a multi-theme framework of plans for future care needs. METHOD:: Inductive content analysis was conducted on 185 interviews with European American and African American older women. RESULTS:: An explanatory framework emerged of five themes, describing varied approaches to planning for future care needs: (a) Autonomous Care Planners, (b) Externally Reliant Planners, (c) Aware of Preference, (d) Wishful Thinkers, and (e) Avoidant. A distinct group included women performing only end-of-life planning. Barriers to planning included low-perceived vulnerability, financial constraints, being uninformed of needed actions, and fear of burdening. DISCUSSION:: Although the majority undertook active steps to prepare for future care needs, many missed key steps or achievement of planning goals recommended by experts. Findings may be applied to long-term care planning research by providing added, rich detail on how aging women construct their options, make choices, and address this important area for future well-being.