Development and preliminary validation of a health-related family quality of life instrument.

The researchers' aims for this preliminary study was to develop an instrument, guided by the Theory of Health-related Family Quality of Life, to measure health-related family quality of life (HR-FQoL) as perceived by women with cancer. The researchers used a two phase design for instrument development: (1) establishing face validity of a 38-item instrument with an expert panel and patient review, and (2) focusing on the internal structure and construct validity of the instrument with responses from female patients (N = 236) with a cancer diagnosis (breast, gynecologic). The researchers identified a final 25-item HR-FQoL instrument with four sub-scales that each captured multiple concepts within the Theory of HR-FQoL. The resulting instrument maybe used by researchers and clinicians to assess various aspects of health-related family quality of life among female breast and gynecological cancer survivors.

Exploring cause of death as a factor in social convoy membership: the case of Pauline.

Research integrating social convoy and continuing bonds frameworks suggests that deceased individuals can be included in convoys as connections may carry on after death. Building on this, we present a qualitative case study that explores whether such relationships are influenced by the way people die. Pauline, 67, compares the "natural" deaths of relatives to her husband's suicide. Analysis of Pauline's interview revealed that the unexplained death of her husband impacted her identity and contributed to his continued existence within her convoy. Consequently, the cause of death may be an important consideration for researchers integrating the social convoy and continuing bonds frameworks.

Elucidating emotional closeness within the Theory of Health-Related Family Quality of Life: evidence from breast cancer survivors.

OBJECTIVES: Due to the increasing survivorship of breast cancer, survivor's view of their families through the process of diagnosis and treatment is essential. The Theory of Health-related Family Quality of Life (HRFQoL) guided this exploration of the ways in which breast cancer impacts family life. In this study, HRFQoL was used to explore breast cancer survivors' perceptions of the theory's sub-concepts of psychological and/or affectional closeness, family communication, and social support. The guiding research question was: In what ways do breast cancer survivors describe their experiences regarding changes in emotional closeness among family members following their breast cancer diagnosis? Participants (N = 22) were interviewed to discuss their experiences with breast cancer, family quality of life, decision-making, basic health information, and personal coping. Data were analyzed using NVivo 9 to conduct thematic analysis and consensual qualitative data analysis. RESULTS: Diagnosis and treatment of breast cancer improved the majority of participants' HRFQoL. Participants who reported positive perceptions prior to diagnosis also reported positive perceptions after diagnosis. These findings elucidate the HRFQoL theory and contribute to understanding how breast cancer impacts family life.

Older Adults' Experiences with Audiovisual Virtual Reality: Perceived Usefulness and Other Factors Influencing Technology Acceptance.

OBJECTIVE: This study explores how older adults respond to audiovisual virtual reality (VR) and perceive its usefulness to their lives. METHOD: Focus groups were conducted with residents of a retirement community after they viewed two audiovisual VR simulations (n = 41). Thematic analysis was used to identify patterns in responses. RESULTS: Older adults described positive and negative emotional reactions to aspects of the VR experience, articulated content preferences, shared ideas to improve the usability of the equipment, and identified facilitators and barriers that influenced perceived usefulness. Recommendations for improving this technology include maximizing the positive aspects of VR through increasing interactivity, facilitating socializing with friends or family, and enhancing older adults' ease of use. Desired content of simulations involved travel, continuing education, reminiscence, and self-care/therapy. CONCLUSION: Virtual reality was reviewed positively, yet modifications are necessary to facilitate optimal user experience and potential benefit for this population. CLINICAL IMPLICATIONS: As older adults are interested in using VR, especially if poor health prevents the continuation of desirable activities or new experiences, it is important to respond to older adults' preferences and remove barriers that limit use and enjoyment.

"I Was There With Her": Experiences of Mothers of Women With Breast Cancer.

The purpose of this qualitative study was to examine the experiences of mothers of breast cancer patients. The theory of health-related family quality of life informed data collection and data analysis. Thirty women were interviewed about their perceptions of family quality of life following their daughters' diagnoses. Themes included historical perspectives on cancer, familial role changes, determining how to best support daughters, mothers' support systems, mothers' coping mechanisms, and positive outcomes of daughters' breast cancer. Mothers also discussed the challenge of reconciling how different family members reacted to their relatives' diagnoses, treatment, and prognoses. Implications for research and practice are discussed.

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

PURPOSE: To 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. METHODS: Twenty-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. RESULTS: Themes 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. CONCLUSIONS: Lack 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.

The Role of Spirituality in the Lives of Mothers of Breast Cancer Survivors.

Breast cancer impacts an entire family system. A cancer diagnosis embeds the patient/survivor and their loved ones in the illness process. The mothers of breast cancer patients are likely impacted in a variety of ways by their daughters' diagnoses. To date, few researchers have investigated the experiences and perspectives of this population. In the present study, authors explored how mothers of breast cancer survivors managed adversities associated with this disease and illness. Using secondary data and narrative analysis, investigators analyzed data gathered from 30 mothers. Findings indicate that participants relied on their spirituality for the management of stress and hardship related to having a loved one with breast cancer. This research has implications for family health and well-being.

Breast cancer-related lymphedema and sexual experiences: a mixed-method comparison study.

OBJECTIVE: Up to 40% of breast cancer survivors develop lymphedema, a chronic and sometimes disabling condition that manifests as abnormal swelling of the effected arm or hand or upper chest areas. Although the effects of lymphedema on quality of life have been well established, less well documented are the sexual experiences of breast cancer survivors with lymphedema. This study is the first to compare the sexual experiences of women with (n = 243) and without breast cancer-related lymphedema (n = 109). METHODS: A mixed-method design was used to explore both quantitatively and qualitatively the impact of lymphedema on participants' sexual experiences. RESULTS: Participants with breast cancer-related lymphedema reported struggles with compression garments and sexual intimacy, negative feelings involving the breast and arm, and feelings of decreased sexual desire. CONCLUSIONS: Recommendations for healthcare professionals, social workers, and marriage and family therapists are offered with the aim of assisting women with breast cancer-related lymphedema and their sexual partners.

Factors Associated with Reported Infection and Lymphedema Symptoms among Individuals with Extremity Lymphedema.

PURPOSE: This study aimed to examine factors associated with reported infection and symptoms among individuals with extremity lymphedema. DESIGN: A cross-sectional study was used. METHODS: Data were collected from a survey supported by the National Lymphedema Network from March 2006 through January 2010. A total of 1837 participants reported having extremity lymphedema. Logistic regression analyses were used. FINDINGS: Factors associated with reported infection among individuals with extremity lymphedema included male gender, decreased annual household income, decreased self-care, self-report of heaviness, and lower extremity as opposed to upper extremity. Factors associated with symptoms included infection, decreased self-care, lower knowledge level of self-care, decreased annual household income, and presence of secondary lower extremity lymphedema. CONCLUSIONS/CLINICAL RELEVANCE: Select factors of income, self-care status, and site of lymphedema were associated with increased occurrence of infection and symptoms among individuals with extremity lymphedema. Longitudinal studies are needed to identify risk factors contributing to infections and symptoms in individuals with lymphedema.

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.

Making Sense of Extreme Longevity: Explorations Into the Spiritual Lives of Centenarians.

As the population grows older and more individuals live into advanced age the oldest-old segment will continue to increase in size. This qualitative study analyzes data gathered using in-depth interviewing and explores the spiritual saliency for sixteen centenarians. Results illustrate the importance spirituality has for older adults over the lifecourse, particularly those in advanced age. Our findings indicate that spirituality is key factor of support, an important resource in late life, and maintains continuity over the lifecourse for the centenarians. Additionally, spirituality serves as critical component in the everyday lives of the participants and provide a framework for helping older adults make sense of having lived a very long life. The findings reported here support the need for researchers and practitioners to consider the importance of spirituality in late life, particularly for those in their last decades.

Breast cancer patients' use of health information in decision making and coping.

BACKGROUND: Breast cancer patients are some of today's most proactive healthcare consumers. Given how the media has highlighted the many issues involved in breast cancer, the unprecedented rise of consumerism in general, and the rise of healthcare consumerism specifically, a plethora of information on breast cancer has emerged in both scientific and popular media. It is timely and appropriate to consider breast cancer patients' perspectives regarding their search for health-related information and its use for treatment decision making and coping. OBJECTIVE: The present study explores health information-seeking behaviors (passive and active), use of health information, sources of health information, and how such information is or is not used in patients' decision making about their treatment. METHODS: This study used a secondary analysis of data regarding health information-seeking behaviors and treatment decisions from 2 separate but compatible qualitative data sets based on in-depth interviews with a total of 35 breast cancer survivors. Data were analyzed using thematic analysis. RESULTS: The majority of participating women were active information seekers (n = 26). Of the subsets of women who described their level of involvement in treatment decision making, the largest number (n = 13) reported a shared responsibility for decision making with their physician, and the next largest subset (n = 9) reported making the final decision themselves. CONCLUSION: These findings provide an enhanced understanding of the preferred source and method of delivery of information given health information-seeking behaviors and decision-making strategies. IMPLICATIONS FOR PRACTICE: How health information is delivered in the future given these findings is discussed with specific attention to matching patient preferences with delivery methods to potentially enhance patients' sense of agency with regard to treatment, which has been shown to improve patients' psychosocial outcomes.

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.

Tumor necrosis factor-alpha upregulates 11beta-hydroxysteroid dehydrogenase type 1 expression by CCAAT/enhancer binding protein-beta in HepG2 cells.

The enzyme 11beta-hydroxysteroid dehydrogenase type 1 (11beta-HSD1) catalyzes the conversion of inactive to active glucocorticoids. 11beta-HSD1 plays a crucial role in the pathogenesis of obesity and controls glucocorticoid actions in inflammation. Several studies have demonstrated that TNF-alpha increases 11beta-HSD1 mRNA and activity in various cell models. Here, we demonstrate that mRNA and activity of 11beta-HSD1 is increased in liver tissue from transgenic mice overexpressing TNF-alpha, indicating that this effect also occurs in vivo. To dissect the molecular mechanism of this increase, we investigated basal and TNF-alpha-induced transcription of the 11beta-HSD1 gene (HSD11B1) in HepG2 cells. We found that TNF-alpha acts via p38 MAPK pathway. Transient transfections with variable lengths of human HSD11B1 promoter revealed highest activity with or without TNF-alpha in the proximal promoter region (-180 to +74). Cotransfection with human CCAAT/enhancer binding protein-alpha (C/EBPalpha) and C/EBPbeta-LAP expression vectors activated the HSD11B1 promoter with the strongest effect within the same region. Gel shift and RNA interference assays revealed the involvement of mainly C/EBPalpha, but also C/EBPbeta, in basal and only of C/EBPbeta in the TNF-alpha-induced HSD11B1 expression. Chromatin immunoprecipitation assay confirmed in vivo the increased abundance of C/EBPbeta on the proximal HSD11B1 promoter upon TNF-alpha treatment. In conclusion, C/EBPalpha and C/EBPbeta control basal transcription, and TNF-alpha upregulates 11beta-HSD1, most likely by p38 MAPK-mediated increased binding of C/EBPbeta to the human HSD11B1 promoter. To our knowledge, this is the first study showing involvement of p38 MAPK in the TNF-alpha-mediated 11beta-HSD1 regulation, and that TNF-alpha stimulates enzyme activity in vivo.

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

This ethnographic study examined women's 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 women's lives.

Discriminating functional and non-functional p53 in human tumours by p53 and MDM2 immunohistochemistry.

Mutation and/or loss of the TP53 tumour suppressor gene is the single most common genetic abnormality in human cancer. The majority of TP53 mutations lead to stabilization of the protein, so that immunohistochemical staining for p53 can suggest mutation status in many cases. However, various false-positive and false-negative situations mean that simple immunostaining for p53 is not informative in a substantial number of tumours. In the present study, a series of 119 human cancers were immunostained using a highly sensitive technique that detects the low levels of wild-type protein expressed in normal cells, such that homozygous gene deletion or non-sense TP53 mutation can be identified by an absence of staining. TP53 gene status was also assessed using FASAY as a genetic/functional screen and in selected cases by direct sequencing. A quantitative scoring system was employed to assess p53 levels, and p53 post-translational modification was evaluated using antibodies that detect specific phosphorylation sites. Phosphorylated p53 correlated with total p53 levels and did not improve the prediction of TP53 mutation status. The transcriptional activity of TP53 was determined by staining for two downstream target genes, p21(WAF1) and MDM2, and statistical correlations between MDM2/p21(WAF1) and p53 were found in tumours with wild-type, but not mutant TP53. Measurement of staining for p53 and MDM2 accurately identifies the TP53 status of tumours. This simple and cost-effective method, applicable to automated staining and quantitation methods, improves the identification of TP53 status over standard methods for p53 immunostaining and provides information about tumour p53 phenotype that is complementary to genotyping data.

Tumor necrosis factor alpha and phorbol 12-myristate-13-acetate down-regulate human 11beta-hydroxysteroid dehydrogenase type 2 through p50/p50 NF-kappaB homodimers and Egr-1.

The 11beta-hydroxysteroid dehydrogenase type 2 (11beta-HSD2) regulates access of 11beta-hydroxyglucocorticoids to the mineralocorticoid receptor by reducing the hydroxyl group of these steroids at position 11. Previous cell culture studies revealed that tumor necrosis factor-alpha (TNF-alpha) down-regulates 11beta-HSD2 activity. Here, we demonstrate that transgenic mice overexpressing TNF-alpha have decreased mRNA abundance and activity of 11beta-HSD2 in kidney tissue, indicating that this effect may occur also in vivo. The analysis of the transcriptional regulation of 11beta-HSD2 by TNF-alpha and phorbol 12-myristate-13-acetate (PMA) with in vivo genomic footprinting in human colon SW620 cells revealed stimulus-dependent protein-DNA interactions in three promoter regions, kappaB1, Sp1/Egr-1I, and Sp1/Egr-1II. Chromatin immunoprecipitation and electrophoretic mobility shift assays demonstrated the relevance of NF-kappaB binding to kappaB1 and of Egr-1 binding to Sp1/Egr-1 sites for the PMA and TNF-alpha effect. We observed a temporal switch of binding to kappaB1 site from active p65/p50 heterodimers to inactive p50/p50 homodimers. TNF-alpha or PMA treatment for 24 h resulted in accumulation of p50 and decrease of p65 nuclear proteins. Overexpression of p50 inhibited HSD11B2 promoter activity and overexpression of Egr-1 inhibited transactivation of the HSD11B2 promoter by p65/p50. In conclusion, TNF-alpha and PMA down-regulate expression and activity of 11beta-HSD2 most likely by a coordinate binding of p50/p50 and Egr-1 to the HSD11B2 promoter.

Dehydroepiandrosterone inhibits the amplification of glucocorticoid action in adipose tissue.

Dehydroepiandrosterone (DHEA) exerts beneficial effects on blood glucose levels and insulin sensitivity in obese rodents and humans, resembling the effects of peroxisome proliferator-activated receptor-gamma (PPARgamma) ligands and opposing those of glucocorticoids; however, the underlying mechanisms remain unclear. Glucocorticoids are reactivated locally by 11beta-hydroxysteroid dehydrogenase type 1 (11beta-HSD1), which is currently considered as a promising target for the treatment of obesity and diabetes. Using differentiated 3T3-L1 adipocytes, we show that DHEA causes downregulation of 11beta-HSD1 and dose-dependent reduction of its oxoreductase activity. The effects of DHEA were comparable with those of the PPARgamma agonist rosiglitazone but not additive. Furthermore, DHEA reduced the expression of hexose-6-phosphate dehydrogenase, which stimulates the oxoreductase activity of 11beta-HSD1. These findings were confirmed in white adipose tissue and in liver from DHEA-treated C57BL/6J mice. Analysis of the transcription factors involved in the DHEA-dependent regulation of 11beta-HSD1 expression revealed a switch in CCAAT/enhancer-binding protein (C/EBP) expression. C/EBPalpha, a potent activator of 11beta-HSD1 gene transcription, was downregulated in 3T3-L1 adipocytes and in liver and adipose tissue of DHEA-treated mice, whereas C/EBPbeta and C/EBPdelta, attenuating the effect of C/EBPalpha, were unchanged or elevated. Our results further suggest a protective effect of DHEA on adipose tissue by upregulating PPARalpha and downregulating leptin, thereby contributing to the reduced expression of 11beta-HSD1. In summary, we provide evidence that some of the anti-diabetic effects of DHEA may be caused through inhibition of the local amplification of glucocorticoids by 11beta-HSD1 in adipose tissue.

Post-breast cancer lymphedema: understanding women's knowledge of their condition.

PURPOSE/OBJECTIVES: To investigate chronic condition representations and treatment choices among women with post-breast cancer lymphedema (LE) to understand their receipt and use of accurate medical information. DESIGN: Qualitative, template analysis. SETTING: Midsized midwestern city and surrounding rural areas. SAMPLE: 18 Caucasian women aged 37-87 years (mean = 58.8 years) with LE. METHODS: Telephone and face-to-face interviews, lasting 45-60 minutes, were conducted by research students and graduate nursing students. Interviews were audiotaped, professionally transcribed, and verified for transcription accuracy. Self-regulation theory as a template was applied to (a) understand participants' use of health information to cope with LE and (b) evaluate the accuracy of participants' health information that may have influenced participants' abilities to make appropriate prevention or treatment choices. MAIN RESEARCH VARIABLES: Participants' illness representations and coping strategies. FINDINGS: Participants were aware of the fundamental cause of their LE--breast cancer treatment. They also were conscious of other causes of symptom onset. These causes are supported by existing empirical evidence. Participants' treatment choices were consistent (e.g., use of compression treatment, massage, elevation, pumps, therapists and therapy centers, and positive attitude and faith) and inconsistent (e.g., effectiveness of exercise and medication in management of LE) with empirical evidence. CONCLUSIONS: Future research and practice should target the role of exercise as a cause of LE and as a treatment option, investigate allergic reactions as a possible catalyst of LE symptoms, work to improve diagnosis of LE and patient education, and examine the effectiveness of medications as a treatment method. IMPLICATIONS FOR NURSING: Review of LE risk factors in the postoperative period and continued assessment and education are vital to a comprehensive approach to post-breast cancer LE care.

Predicting breast cancer-related lymphedema using self-reported symptoms.

OBJECTIVES: This 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). METHODS: This 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. RESULTS: The 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., >or=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. CONCLUSIONS: The 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.