M. Elise Radina

Predicting Breast cancer-related Lymphedema using self-reported symptoms

ObjectivesThis study aimed to determine the accuracy of using self-reported signs and symptoms to identify the presence of lymphedema as well as the usefulness of identifying clinically measurable lymphedema on the basis of certain symptoms elicited by the Lymphedema Breast Cancer Questionnaire (LBCQ). MethodsThis analysis used logistic regression to identify symptoms predictive of differences between symptom experiences of participants belonging to two distinct groups (study A): those with known post-breast cancer lymphedema (n = 40) and those in a control group of women with no history of breast cancer or lymphedema (n = 40). Symptoms in this model of best fit were used to examine their relation to limb circumferences of breast cancer survivors in a second independent data set (study B; n = 103) in which a diagnosis of known lymphedema was not previously determined using symptom experiences. ResultsThe presence of lymphedema was predicted by three symptoms comprising a model of best fit for study A (c = .952): “heaviness in past year,” “swelling now,” and “numbness in past year.” Using this model, prediction of absolute maximal circumferential limb difference (i.e., ≥2 cm) in study B showed that “heaviness in the past year” (p = .0279) and “swelling now” (p = .0007) were predictive. “Numbness in the past year” was not predictive. However, those with lesser limb differences reported this symptom more often. ConclusionsThe findings suggest that changes in sensations may be indicators of early lymphedema or other treatment-related sequelae that must be assessed carefully at each follow-up visit and over time. A combination of symptom assessment and limb volume measurement may provide the best clinical assessment data for identifying changes associated with post-breast cancer lymphedema.

Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families

This study involves secondary analysis of an existing qualitative dataset (in-depth interviews with survivors [n = 6] and health professionals [n = 2], observations of a support group [n = 3], and field notes). Based on previous findings from this dataset, new questions arose regarding why only some of post–breast cancer lymphedema women who were interviewed appeared resilient within the context of their families. In the present study, we reinvestigate this dataset using the resiliency model of family stress, adjustment, and adaptation to guide our investigation via the construction of an a priori template used in analyses. Three stressors are identified that contribute to the vulnerability of these women. Resiliency in the women is characterized as adjustment, adaptation, or crisis. The present findings provide a foundation for assisting women with lymphedema and their families and underscore practitioners’ need to serve the patient and the family.

When I am an old woman, I shall wear purple: Red Hatters cope with getting old.

ABSTRACT This ethnographic study examined womens friendships in Red Hat Society (RHS) chapters. Qualitative data included in-depth interviews (n = 25), a focus group interview (n = 7), participant observation, and examination of RHS publications. Results suggest that participation in the RHS (1) aids in developing and enhancing positive attitudes about self and aging that contribute to overall well-being, (2) offers the opportunity to obtain instrumental and emotional support, and (3) provides social connections that prevent feelings of social isolation. Collectively, these findings highlight the potential buffering role of RHS participation in womens lives.

Older Adults’ Participation in Nursing Home Placement Decisions:

African American (n = 7) and European American (n = 9) older adults newly relocated to a nursing home described the extent of their relocation decision-making participation via semistructured interviews. Additionally, the study identified whether sense of coherence, functional ability, and physical functioning were related to decision participation. Two themes emerged, “They put me in here” and “I/we made the decision (together with others).” Older adults whose decisions were in the “They” category were younger, were African American, had more children, had lower Mini Mental State Examination scores, and had less education than those in the “I/we” category. Findings suggest older adults’ participation in nursing home relocation decisions may be determined more by informal support than ability to participate. No significant differences were found in sense of coherence, functional ability, or physical functioning across decision-making categories. Decision-making participation approached significance in a positive association with social support.

Making Self-Care a Priority for Women At Risk of Breast Cancer–Related Lymphedema:

Estimates suggest that between 41% and 94% of breast cancer survivors may develop the chronic condition of secondary lymphedema at some point during their lifetimes. Self-care is critical for effective lymphedema management and risk-reduction. At the same time, women in general have been characterized as engaging in self-sacrificing behaviors in which they choose other-care over self-care. This study explored the self-care experiences of women with breast cancer within the contexts of complex and demanding familial and work-related responsibilities. Participants (N = 14) were enrolled in a behavioral-educational intervention aimed at lymphedema risk-reduction. This feminist family theory-informed secondary analysis of qualitative data focused on women’s familial roles and the balance or lack of balance between self-sacrifice and self-care. Findings included participants’ struggles with time management and prioritizing self-care over care of others as well as making a commitment to self-care. Findings have implications for patient and family-level education and research with regard to gender role-based barriers to self-care and self-care within complex social contexts.

Conspicuously Consuming: The Red Hat Society and Midlife Women's Identity

Drawing from interviews and fieldwork with Red Hat Society members (RHS), we consider the growing consumer culture of the RHS, how members conspicuously consume red and purple dress, and for what purposes they do so. RHS members in this study develop visible group identity, reinforce traditional gendered behavior, and challenge publicly what it means to be “old.” We investigate consumption as a means of discerning whether midlife womens participation in RHS is a commodity to be marketed, bought, and sold. Is the public space that RHS women take up collectively challenging the ageist ways in which society views aging women? We investigate the consumer culture of the RHS to determine possible links between conspicuous consumption and group identity within the cultural context of aging womens social invisibility.

Family Life Education: Issues and Challenges in Professional Practice

This chapter reviews the field of family life education (FLE). This review begins with a historical overview of FLE as a field of study and an area of professional practice, with specific focus on the issues and challenges faced by family life educators and others in defining the scope, content, and goals of the field. Professionalization of the field is reviewed. Two major aspects of importance for ethical and appropriate professional practice are then discussed: (1) the role of family life educators’ philosophies of education in influencing programmatic efforts, and (2) approaches to curriculum development. The chapter concludes with a summary of areas of challenge for the field of FLE where continuing efforts for developing the field should focus.

Preparing for and Coping with Breast Cancer-Related Lymphedema

Despite recent trends indicating that new diagnoses of breast cancer have decreased slightly, the American Cancer Society estimates that there will be 207,090 new cases of invasive breast cancer and 54,010 new cases of in situ (i.e., early stage) breast cancer that are likely to have developed in 2010 (American Cancer Society, 2010). Given that the 5-year survival rate for breast cancer is now 90% and that the National Cancer Institute estimates that there were approximately 2.5 million women living in 2006 who had a history of breast cancer (American Cancer Society, 2010; Horner et al., 2009), experiencing breast cancer is increasingly about survivorship. Breast cancer survivors are at lifetime risk for developing lymphedema, a chronic condition that occurs in up to 40% of this population (Armer, Stewart, & Shook, 2009; American Cancer Society, 2007; Ferlay, Bray, Pisani, & Parkin, 2004). Lymphedema involves the accumulation of protein-rich fluid that impacts physical, functional, and psychosocial health and well-being. Second only to breast cancer recurrence, lymphedema is the most dreaded outcome of breast cancer treatment. Research has shown that women with breast cancer-related lymphedema report their most frequent action for management of lymphedema symptoms is no action (Armer & Whitman, 2002). This indicates that patient education about self-care is critical for effective self-management and risk reduction. Given the distressing and chronic nature of breast cancer-related lymphedema, there are both individual and family level psychosocial impacts related to the onset and long-term management.

Divorce and Mid- and Later Life Families: A Phenomenological Analysis with Implications for Family Life Educators

ABSTRACT A growing number of mid- and later life individuals and families are experiencing divorce and remarriage. Mid- and later life families are those who have begun to or may have launched their adult children. As a result, these families may include in-laws and grandchildren. Limited research has addressed the potentially unique experiences of these families whose lives are made more complex and complicated by divorce, remarriage, or both. The purpose of this article is to examine, from a phenomenological perspective, the lived experiences of individuals and families experiencing divorce in mid- and later life. In so doing, four case studies are presented that represent four common pathways through divorce and remarriage in mid- and later life: career divorced, seasoned divorced, newly divorced, and interrupted career divorced. Using these case studies and our interpretation of them based on a phenomenological approach, we offer implications for family life educators for improving the delivery of educational services to families facing mid- and later life divorce and remarriage.

Breast cancer survivors’ perspectives of critical lymphedema self-care support needs

PurposeTo solicit breast cancer survivors’ perspectives on the variety of issues they face related to lymphedema self-care and identify support needs perceived as critical for managing their chronic medical condition.MethodsTwenty-one breast cancer survivors with lymphedema participated in audio-recorded focus groups about barriers and facilitators of self-care. Transcripts were analyzed using ATLAS.ti software by two coders. Triangulation of findings provided for refinement and category confirmation.ResultsThemes identified included lack of social support, lack of resources for self-care activities, and self-advocacy by default. Lack of social support subthemes were feeling misunderstood, minimization of needs, and feeling criticized. Lack of resources for self-care activities subthemes were lack of both tangible self-care support and self-care supplies. Self-advocacy by default subthemes were the need to proactively manage lymphedema complications, the need to educate health-care workers, and feeling marginalized by the health-care system.ConclusionsLack of support and the failure of others to recognize lymphedema as a chronic condition set this patient population apart from other patients with chronic diseases and decreases the amount of help needed to manage the condition.