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.

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.

"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.

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.