The process of self-report of impairment in clinical research.

This paper examines how labels for impairment are negotiated by people with disabilities during clinical assessment. It builds on Robert Murphy's (1987) explanations of the disability experience as rooted in the individual's sense of having multiple past, present and intended future body-selves. Using transcripts of five consecutive daily clinical research assessments, it describes the conduct of clinical research assessments with an older man with stroke-related motor impairments and dysphoria. It also examines how the researcher as Other shapes a person's sense of identity, experience and quality of life by regulating the medical labels for personal experience, and by authoring socially authoritative scientific models of disabilities. Points of dissension (regarding identity, discourse and time perspectives) and collaboration are identified and then illustrated with excerpts from the transcripts. Analysis reveals how salient personal experiences are locally asserted in discourse, and selectively misrepresented in the clinical research record.

The romance with personal meaning in gerontology: cultural aspects of life themes.

Life narratives have wide appeal because they promote the modern ideal of freeing people to reflect on their life and to share personal meanings and experience in public. Constructing a life story may aid adult development and well-being. This article explores how to enhance these benefits, but criticizes the idealization of stories and their benefits. Using life stories from 16 randomly selected clinically depressed and nondepressed elderly persons, this article examines the narrative structures and how these relate to mood and to ideal images for the self. Findings show that some normative styles for self-representation (i.e., personal themes) serve to express distress instead of positive well-being. The discussion points to cultural and historical forces shaping our ideas about themes in stories. Life stories do privilege personal meanings, but the settings and form constrain their value as research data and their effectiveness as vehicles for enhancing well-being.

Extending the critical gerontology perspective: cultural dimensions. Introduction.

This introduction outlines how the emerging framework of critical gerontology (CG) may be enhanced by greater emphasis on understanding the cultural influences on research and practice in gerontology. CG pursues empirical insights into the historical and cultural forces shaping the sense of the problem for study, that is, the formulation of topics and ways of defining issues. Illustrations are drawn from a recent GSA symposium. The articles following this introduction document, in relation to two key constructs, the need to understand how cultural-historical contexts complexly inform the focus of core topics of attention, how these are operationalized for research and policy, and their role in shaping the course of American gerontology.

A path not taken: a cultural analysis of regrets and childlessness in the lives of older women.

This paper explores regrets about childlessness in 90 older women interviewed using qualitative methods. Regrets were discussed in the context of the changing meaning of childlessness over the life course. We found that issues of regret are situated in a cultural system that renders childless women marginal. We argue that regrets should be understood in a wider cultural context that incorporates the cultural construction of the self over time.

Emerging concerns of older stroke patients about assistive device use.

Assistive devices minimize limitations from physical impairment and are integral to rehabilitation. Little is known about older patients' concerns, perceptions, and beliefs about assistive devices. This study used a structured, qualitative approach to describe device perceptions of 103 stroke patients in rehabilitation. Six dimensions of patient concerns were identified, including the operation and utility of devices, social contexts and consequences, and attributions of cultural meanings of use. Initial device use posed cultural value dilemmas originating in discrepancies between sociocultural beliefs and conflicting normative expectations. Knowledge of these dimensions suggests new areas for social science research and refinements to clinical practice.

The cultural context of polio biographies.

Cultural contexts influence the ways individuals interpret and experience functional losses associated with post-polio sequelae. Using in-depth multiple interview case studies from two National Institute on Aging projects, the concept of "biographies" is presented to place the individuals' polio-related experiences within the context of their lives. Two major cultural contexts shape the construction of polio biographies: normative life course expectations and developmental tasks; and traditions associated with polio recovery and rehabilitation. The authors identify key dimensions of personal concern among polio survivors that can be used as entrance points for effective clinical intervention and to promote treatment compliance.

What is a missed dose? Implications for construct validity and patient adherence.

The construct 'missed dose' is central to many assessments of medication adherence. However, few studies have investigated how patients or clinicians conceptualize missed doses or the extent of the concordance or discordance between clinicians and patients. To address this gap we conducted semi-structured interviews with 45 sero-positive African American adults taking HAART and 17 of their clinicians. Results reveal large variability in missed dose conceptions among both patients and physicians and significant differences between the two groups. Overall, patients reported a stricter definition of missed dose than did clinicians. Fifty-five percent of patients thought that a pill-taking delay of six hours beyond the prescribed dosing time constituted a missed dose, by comparison, only one physician agreed with this assessment. More than one-third of patients thought that the proper response to a missed dose would be to skip it altogether, but only about 12% of clinicians agreed. These findings have implications for the construct validity of self-report measures of adherence, for patient adherence behaviours based on missed dose conceptions and for patient-physician relationships and communication within the clinical environment.

Adherence discourse among African-American women taking HAART.

Low adherence is the single most important challenge to controlling HIV through the use of high acting anti-retrovirals (HAART). Non-adherence poses an immediate threat to individuals who develop resistant forms of the virus as well as a public health threat if those individuals pass on treatment-resistant forms of the virus. To understand the concerns and perceptions that promote or deter adherence to antiretroviral medication by HIV-positive African-American women, we conducted in-depth interviews with 15 African-American women taking HAART. We focused on the discourse and narratives women use in talking about their adherence practice. Discourse analysis was utilized to identify and explore the sources of influence used by these women in describing their adherence practice. Roughly a third of the sample fell into each of the three self-assessed adherence categories: always adherent, mostly adherent and somewhat adherent. Among the 'always adherent', 80% of the sources of influence cited supported adherence, while only 48% and 47% of the authoritative sources cited by women in the 'mostly' and 'somewhat' categories supported adherence. Each self-assessed adherence group was characterized by its own distinctive discourse style. Findings suggest that adherence to HAART among African-American HIV-positive women would be improved by identifying those influences undermining adherence. Focused study of the 'always adherent' types is recommended.

Key relationships of never married, childless older women: a cultural analysis.

The key relationships of never married, childless older women, that is, those relationships described as central, compelling, enduring, or significant throughout their lifetimes, were explored in this study. Analysis of qualitative, ethnographically based interviews with 31 women indicated that the key relationships they describe fall into three classes: ties through blood, friendships, and those we label "constructed" ties (kin-like nonkin relations). We report on types of key interpersonal relationships of these women and also examine limits to these key relations, describing some strategies these women have adopted for gaining kin-like relations and the problems inherent in them for the expectation of care in later life. Theoretical work by anthropologist David Schneider concerning American kinship as a cultural system is used to explore dimensions of these relationships.

Cultural differences among elderly women in coping with the death of an adult child.

This article describes differences between elderly Jewish and non-Jewish women in dealing with the death of an adult child. Dimensions of difference include the meaning of the death to the mother, her expression of grief, and her conceptualization of the future in the face of the loss. Results are based on data from 12 Jewish and 17 non-Jewish women taking part in a larger study examining generativity as a predictor of well-being in women over 60. Data collection included in-depth life histories and quantitative evaluations of well-being, affect, generativity, and personality variables associated with mothering. Qualitatively, Jewish women were depressed and fixed in grief, with the loss remaining central to their lives. Non-Jewish women articulated philosophies of acceptance, putting the death in a perspective that enabled them to move beyond their loss. Well-being, affect, generativity, and personality measures statistically supported the qualitative differences found between the groups.

Exploring the validity of the Affect Balance Scale with a sample of family caregivers.

Open-ended responses of caregiving daughters and daughters-in-law were generated by a modified random probe technique to investigate the construct validity of the two subscales of the Affect Balance Scale (ABS), i.e., the 5-item Positive Affect Scale (PAS) and the 5-item Negative Affect Scale (NAS). A set of criteria were developed to distinguish between responses that did and did not correspond to Bradburn's assumptions concerning affect. While most responses met at least one of the criteria, very few met all. In exploring the nature of affect, we found that positive affect was based to a large extent on personal accomplishments and the recognition of others. The assessment of negative affect was a more interior, or self-focused process. For a significant subset of the sample, a negative response to a closed-ended PAS or NAS item implied disagreement or discontent with the wording or the implications of the item itself, rather than an absence of affect. Not all of the ABS items were equally valid measures of affect.