The Social Construction of "Emerging Elders": Implications for Age-Friendly Community Assessments.

The term "emerging elders" has surfaced in age-friendly community assessment tools to denote a subset of older adults; however, limited guidance is provided on its application to aging populations. The goal of this study was to develop a data-driven conceptualization of "emerging elders" as part of an age-friendly community assessment. Adults, aged 55 years and above, were asked about their subjective meaning of "emerging elder" within the context of a larger study of aging well in a large U.S. metropolitan city. Using inductive and deductive methods, the researchers analyzed qualitative data (N = 38) collected from individual interviews with homebound older adults (n = 15) and participants of three focus groups (n = 23). Four themes suggest that emerging elderhood is related to chronological age, functional ability, transitions, and self-identity. Findings suggest that the term emerging elderhood may foster negative images of older adults consistent with Western cultural discourse, despite the positive connotations associated with "emerging elder" in indigenous and spiritual communities. Findings underscore the need to further refine age-friendly community assessments that take into account the social constructions ascribed to older adults and need for strategies to engage emerging elders in future research of age-friendly communities.

Pathways to age-friendly communities in diverse urban neighborhoods: Do social capital and social cohesion matter?

Using a social capital and social cohesion lens, we reposition the concept of civic engagement among older adults to examine pathways for building age-friendly communities. We analyzed data drawn from a Community-Based Participatory Research study in the Southern U.S. that explored lived experiences of older adults, age 55 and above, who participated in individual interviews (n = 15) and six focus group discussions (n = 45) to examine their perceptions of social identity, social connectedness, and civic engagement geared toward an age-friendly city. Findings indicated that several older adults had access to social networks and socially invested resources, thereby having opportunities for civic engagement and building age-friendly neighborhoods. However, social, cultural, linguistic, and structural barriers were more evident among certain diverse ethnic populations. Marginalized low-income minorities and immigrants, such as Hispanic participants, felt the lack of social cohesion among the larger society limited their ability to give back, thus decreasing their civic engagement activities. In contrast, Caucasian and African-American older adults were able to contribute to the political process through more civic participation activities. We provide implications for examining the role of social capital and social engagement to bolster civic engagement among older adults in building age-friendly communities.

End-of-Life Care in Nursing Homes: A Qualitative Interpretive Meta-Synthesis.

BACKGROUND: Due to large number of deaths occurring in nursing home (NH) settings, along with reports of pain and suffering, there is great need for improvements in the provision of end-of-life (EOL) care in NHs. OBJECTIVE: The aim of this study was to develop a comprehensive understanding of the experience of dying in NHs through the perspective of residents, family, and facility staff. DESIGN: This study uses a qualitative interpretive meta-synthesis to provide a holistic view of EOL care in NHs across multiple qualitative studies. SETTING/SUBJECTS: Researchers synthesized the findings of 13 qualitative articles, including the diverse perspective of 91 dying residents, 419 NH staff, and 156 family members/caregivers across at least 44 NHs. METHODS: A qualitative meta-synthesis employs the following steps: identification of studies, theme extraction, translation, and synthesis of findings. RESULTS: Thematic analysis is organized using a conceptual model demonstrating the links between environmental and personal factors impacting EOL care in NHs. CONCLUSIONS: Findings provide support for the importance of a relational community and culture change within NHs for positive EOL experiences, in addition to providing a model to guide future research priorities.

Positive aspects of having had cancer: A mixed-methods analysis of responses from the American Cancer Society Study of Cancer Survivors-II (SCS-II).

OBJECTIVE: This study focused on understanding positive aspects of cancer among a large, national sample of survivors, 2, 5, and 10 years' postcancer diagnosis, who responded to the American Cancer Society Study of Cancer Survivors - II (SCS-II) survey "Please tell us about any positive aspects of having cancer." METHODS: A sequential mixed methods approach examined (1) thematic categories of positive aspects from cancer survivors (n = 5149) and (2) variation in themes by sociodemographics, cancer type, stage of disease, and length of survivorship. RESULTS: Themes comprised 21 positive aspects within Thornton's typology of benefits that cancer survivors attribute to their illness: life perspectives, self, and relationships. New themes pertaining to gratitude and medical support during diagnosis and treatment, health-related changes, follow-up/surveillance, and helping others emerged that are not otherwise included in widely used existing benefit finding cancer scales. Gratitude and appreciation for life were the most frequently endorsed themes. Sociodemographics and stage of disease were associated with positive aspect themes. Themes were not associated with survivor cohorts. CONCLUSIONS: No differences in perceived positive aspects across survivor cohorts suggest that positive aspects of cancer may exist long after diagnosis for many survivors. However, variation across sociodemographics and clinical variables suggests cancer survivors differentially experience positive aspects from their cancer diagnosis. IMPLICATIONS FOR CANCER SURVIVORS: This analysis provides new information about cancer survivors' perceptions of positive aspects from their cancer and factors associated with benefit finding and personal growth. This information can be useful in further refining quality-of-life measures and interventions for cancer survivors.

Preparation for the end of life and life completion during late-stage lung cancer: An exploratory analysis.

OBJECTIVE: Our aim was to explore preparation for the end of life (EoL) and life closure among persons with advanced metastatic lung cancer. Understanding quality of life through the lens of preparation and completion is important since the trajectory of lung cancer can be relatively short, often leading to application of cancer-directed therapies near death without the opportunity for advance planning or palliative care. Clinical research is needed to understand the kinds of distress specific to older adults with advanced lung cancer that are amendable to palliative care interventions. METHOD: We employed an exploratory cross-sectional design to examine psychosocial and existential concerns among a purposive sample (N = 30) of advanced lung cancer patients using the "end-of-life preparation" and "life completion" subscales of the Quality of Life at the End of Life (QUAL-E) questionnaire. Nonparametric methods were employed to analyze preparation, completion, global quality of life (QoL), and the associations among depressive symptoms, preparation, completion, and global QoL. RESULTS: Higher scores on life completion were associated with better global QoL, and with items related to transcendence, communicative acts, and interpersonal relationships demonstrating important contributions. The perception of being a future burden on family members was the greatest concern within the preparation domain. Depressive symptoms were not associated with preparation, completion, or global QoL. SIGNIFICANCE OF RESULTS: Psychosocial and existential issues contribute to QoL at the EoL among older adults with late-stage lung cancer during cancer-directed therapy, concurrent care, and hospice. The role of preparation, especially self-perceived burden, merits further research early on in the oncological setting. The preparation and life completion subscales of the QUAL-E are feasible clinical tools for facilitating dyadic communication about sensitive topics in the palliative care setting.

Advice from working women with retired partners.

in the 21st century, as more women are employed full-time and couples increasingly share egalitarian values, more women continue employment after their partners have voluntarily retired. However, we know very little about the experiences of this growing population of women. We asked working women with retired partners to share their advice for other women who may face this developmental transition. Open-ended responses from 97 women were analyzed to identify pertinent issues and themes. Four primary content areas were identified: time management, division of household labor, financial planning, and communication. Communication between partners was both a topic of concern as well as the solution suggested to resolve conflicts or differences that may arise when women live with a retired partner. It is expected that future changes in the workforce and improvements in the gender balance within relationships will continue to impact experiences for working women with retired partners.

Between Two Worlds: Liminality and Late-Stage Cancer-Directed Therapy.

Disease-directed therapy near death is a growing trend among persons living with late-stage cancer. As a sociocultural phenomenon, cancer-directed therapy (e.g., chemotherapy) when given for very advanced disease is a process that offers questionable benefits and portends further suffering, but also suggests potential for growth and transcendence. Theories and concepts drawn from cultural anthropology, sociology, and existentialism illustrate how contextual factors contribute to the creation of a "liminal space"; the latter part of the cancer trajectory where living and dying can overlap. When applied to clinical practice, this theoretical framework gives the patient, family, and health care provider a way of "unmasking" a period of transition during terminal illness when aggressive disease-directed care continues to be provided. The liminal space may function as an existential plane; a gateway or threshold with inherent potential for psychospiritual development during the final stage of life.

Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II.

BACKGROUND: Cancer survivors may continue to experience psychosocial and physical needs related to their cancer experience for many years after treatment. The specification of these needs across cancer types and by survivor characteristics may lead to better prevention approaches and clinical responses. Mixed methods were used to examine responses to an open-ended question about current unmet needs from a survey of 2-, 5-, and 10-year cancer survivors. METHODS: Qualitative techniques were used to code themes of unmet needs from open-ended responses. These themes were then examined with quantitative techniques to describe the frequency of unmet needs across disease subgroups and demographic subgroups of survivors. RESULTS: There were 1514 responses to the open-ended question on unmet needs. Respondents ranged in age from 24 to 97 years and included proportionately more women, and 18% were minorities (black and Hispanic). Sixteen themes of unmet needs were identified. The number and type of unmet needs were not associated with the time since cancer treatment. Breast cancer survivors identified more unmet needs than other survivors. Male survivors and especially prostate cancer survivors identified personal control problems as current needs. Older cancer survivors identified fewer unmet needs on average than younger survivors. CONCLUSIONS: This analysis of an open-ended question on unmet needs extends our understanding of how cancer survivors perceive problems related to cancer. How cancer-related needs change over time and differ by sex, race, and ethnicity and how problems with personal control become manifest are areas of inquiry requiring further research.

Understanding quality-of-life while living with late-stage lung cancer: an exploratory study.

U.S. Veterans have a higher prevalence of advanced lung cancer and poorer survival outcomes compared to the general population; yet, no studies exist which specifically explore the psychosocial and existential quality-of-life (QOL) of late-stage lung cancer among this population. This article presents the perspectives of older veterans (N = 12) living with late-stage lung cancer who were receiving chemotherapy, routine hospice care, or both concurrently. Based on individual interviews, themes associated with loss of functionality, close relationships, and communicative acts contributed to veterans' perceptions of diminished or enhanced QOL while living with advanced disease. An overarching theme, loss of the person I know myself to be, suggests that personhood is an important concept to consider in QOL assessment. While findings suggest that the experiences of older Veterans with late-stage lung cancer are similar to other populations of lung cancer patients, and persons with incurable cancer in general, further research regarding the influence of veteran identity at end-of-life is warranted. Further research is needed which explores the influence of a whole person approach to QOL during life-limiting illness and end-of-life decision-making, particularly while receiving late-stage cancer-directed therapy.

"It's Like Being a Well-Loved Child": Reflections From a Collaborative Care Team.

OBJECTIVE: The present case study examines how a collaborative care model for the treatment of depression works with a low-income, uninsured adult population in a primary care setting. METHOD: The qualitative interviews were conducted in 2010 at a primary care clinic as part of an evaluation of the Integrated Behavioral Health program, a collaborative care model of identifying and treating mild-to-moderate mental disorders in adults in a primary care setting. A single-case study design of an interdisciplinary team was used: the care manager, the primary care physician, the consulting psychiatrist, and the director of social services. Other units of analysis included clinical outcomes and reports that describe the patient demographics, services offered, staff, and other operational descriptions. RESULTS: Multiple themes were identified that shed light on how one primary care practice successfully operationalized a collaborative care model, including the tools they used in novel ways, the role of team members, and perceived barriers to sustainability. CONCLUSIONS: The insights captured by this case study allow physicians, mental health practitioners, and administrators a view into key elements of the model as they consider implementation of a collaborative care model in their own settings. It is important to understand how the model operates on a day-to-day basis, with careful consideration of the more subtle aspects of the program such as team functioning and adapting tools to new processes of care to meet the needs of patients in unique contexts. Attention to barriers that still exist, especially regarding workforce and workload, will continue to be critical to organizations attempting integration.

An analysis of Social Work Oncology Network Listserv Postings on the Commission of Cancer's distress screening guidelines.

This is a qualitative study of listserv postings by members of the Social Work Oncology Network (SWON) in response to the Commission on Cancer's 2011 guidelines for distress screening of cancer patients. Archived listserv postings for the period of December 2010 to November 2011 were deidentified and a sample was derived by a list of keywords for the analysis. Aims of the study included describing the general categories and themes of the postings devoted to the new distress screening standard and examining the process of facilitation of mutual support and information exchange by oncology social workers in response to the new screening standards. During the 12-month timeframe there were 242 unique listserv postings sampled for the analysis. Oncology social worker (OSW) discussion of the distress screening guidelines remained a constant topic over the 12 months, and major themes that emerged from the data included processes of implementation of distress screening in cancer centers, screening policies and protocols, screening tool choice, and oncology social worker professional identity. The SWON listserv members used the listserv as a mechanism to post their requests for information on screening, to share their experiences in the beginning stages of implementing the guidelines, and to build support for legitimizing oncology social workers as the lead profession in the implementation of the guidelines in member cancer centers.

Establishing an end-of-life program in an academic acute care hospital.

The primary goal of end-of-life (EOL) care is to relieve suffering through measures that improve comfort and address the psychological, social, and spiritual needs of the dying. This article discusses the components of a pilot project that focused on palliative EOL care at an academic acute care hospital. An interdisciplinary team of nurses, social workers, chaplains, patient care coordinators, and advanced practice nurses established a common vision for the care of patients who were "in the dying process," or were expected to die during their hospitalizations. A nurse-social worker "Care-Pair Team" completed a consistent interdisciplinary EOL care needs assessment when treatment goals became strictly palliative. Interventions were driven by a clinical pathway and a pre-printed physician's order set that continually clarified the goals of treatment. Key elements of the program included leadership support, advance directives, education, communication, family involvement, symptom management, professional collaboration, and outcomes measurement.