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.

Associations between changes in resilient coping and posttraumatic stress disorder symptoms.

The pervasive, damaging nature of posttraumatic stress disorder (PTSD) presents enormous clinical challenges. Understanding the relationship between patients' perceptions of PTSD symptoms and resilient coping strategies may prompt investigation of clinical interventions that improve adaptive, resilient coping skills. In this study, we examined whether changes in resilient coping were related to changes over time in the PTSD symptoms of intrusion and avoidance. A secondary analysis was conducted using longitudinal data from the community-based Washington State Twin Registry. Participants completed the four-item Brief Resilient Coping Scale (BRCS) and the Avoidance and Intrusion subscales of the Impact of Events Scale (IES) at two points in time that were at least 2 years apart. To limit analyses to participants reporting PTSD symptoms at baseline, an initial value of at least 1.0 on either Avoidance (n = 1,337) or Intrusion (n = 1,206) was required for inclusion in the sample. Using linear regression, we assessed associations of change in BRCS with a change in IES scores, controlling for the respective initial scores on each measure. Controlling for initial BRCS and IES-Intrusion values, we observed a small, statistically significant association between change in BRCS and change in IES-Intrusion scores (b* = -0.07; p = .003). There was no statistically significant association between change in BRCS and change in IES-Avoidance (b* < 0.01; p = .869). In this large, longitudinal sample, increases in resilient coping were related to decreases in intrusive thoughts over time. Because coping patterns can be taught, these results warrant further investigations into adaptive coping patterns associated with diminishing PTSD symptoms.

A Randomized Clinical Trial Comparing the Impact of a Web-Based Multimedia Intervention Versus an Educational Pamphlet on Patient Outcomes in Breast Cancer Survivors with Chronic Secondary Lymphedema.

Objective: The purpose of this study was to evaluate the effects of a Web-based Multimedia Intervention (WBMI) for breast cancer-related lymphedema (BCRL) patients on symptom burden, function, psychological well-being, costs, and arm volume. Methods: Women with BCRL were randomized to intervention (n = 80) or control (n = 80) groups. The WBMI offered 12 modules, each of which took about 30 minutes to complete. The Pamphlet took about 2 hours to read. Data on symptom burden, psychological well-being, function, and costs were collected preintervention; and 1, 3, 6, and 12 months postintervention. A subgroup of 45 regional patients had arm extracellular fluid measured by bioimpedance at baseline and at 3, 6, and 12 months postintervention. Intervention perceived value was also captured. Results: A statistically significant difference (p = 0.011) was observed for rates of intervention completion, WBMI (58%), and Pamphlet (77%). With the exception of the number of biobehavioral symptoms (mood), no statistically significant differences between groups in symptom reduction were apparent between baseline and 1 or 12 months (effect sizes = 0.05-0.28, p > 0.05) based on the Lymphedema Symptom Intensity and Distress Scale-Arm (LSIDS-A). No statistically significant differences between the groups were observed for changes in other variables. The WBMI was perceived as providing better self-care information than the Pamphlet (p = 0.001). Conclusions: WBMI participants experienced improved biobehavioral symptoms and higher perceived quality of information. The lack of significant differences on other variables may be due to the high percentage of participants who did not complete the WBMI.

Theoretical Approaches to Enhancing Motivation for Adherence to Antidepressant Medications.

PROBLEM: Adherence to antidepressants is a major challenge in our health care system, with a high percentage of patients discontinuing their medications within six months. AIMS: The purpose of this position paper is to discuss theoretical frameworks that address the psychological beliefs, benefits and barriers and feelings of autonomy that affect a person's willingness and motivation to take anti-depressant medications within a therapeutic relationship with a nurse practitioner. METHODS: Three theoretical frameworks were selected to highlight particular perspectives relevant to enhancing patient motivation for medication adherence. The Self-Regulation Model, Health Belief Model, and Self-Determination Theory combined with motivational interviewing all offer guidance on strategies for improving adherence to antidepressants. CONCLUSIONS: The Self-Regulation Model underscores the importance of illness representations that prompt considering patient perceptions of depression that affect adherence. The Health Belief Model focuses on cost-benefit considerations that affect patient's adherence, along with perceived control. Finally, Self-Determination Theory combined with motivational interviewing offers strategies that enhance autonomy and optimize collaboration and motivation for adherence. RELEVANCE FOR CLINICAL PRACTICE: These three theoretical models are applied to a vignette for a patient who is having difficulty with adherence to antidepressant medication.

Measurement properties of the brief resilient coping scale in patients with systemic lupus erythematosus using rasch analysis.

BACGROUND: Resilience has been defined as the capacity or the ability to rebound from and positively adapt to significant stressors, despite experiences of significant adversity or trauma. To capture to what extent an individual copes with stress in a resilient fashion the Brief Resilient Coping Scale (BRCS) was developed. This tool was validated in people with chronic disease, such as rheumatoid arthritis using standard psychometric techniques of classical test theory, but not yet in patients with Systemic lupus erythematosus (SLE). The aim of this study was to explore the psychometric properties of the Brief Resilient Coping Scale in patients with SLE using Rasch analysis. METHOD: This study used cross-sectional data. The BRCS was administered to 232 patients with systemic lupus erythematosus. The aspects analyzed were unidimensionality, local independence and differential item functioning (DIF) to construct an interpretative scale of scores with the Rasch model. RESULTS: Rating scale mode (RSM) showed that the four categories used in the items of the BRCS are properly ordered. The four items provided a good fit to the polytomous Rasch model. Moreover, the parameters were sufficiently separated to measure resilience in patients with SLE. BRCS is a unidimensional scale (eigenvalue = 1.843) of resilience and the items were locally independent. There was no DIF between males and females in the sample. Only marginally significant differences depending on the level of education were found. The BRCS showed adequate discriminant validity between groups of scores. CONCLUSIONS: BRCS is a suitable scale for measuring resilience in patients with SLE. This scale might be useful for clinicians to obtain information concerning the degree of resilience that each patient has, allowing individuals with low resilience to be identified who need interventions aimed at developing coping skills.

Resilient Coping Moderates the Effect of Trauma Exposure on Depression.

Posttraumatic depression rates are increasing in the United States, and there is a great need to identify malleable factors that could moderate posttraumatic depression levels. The purpose of this study was to examine whether resilient coping moderates the effects of trauma exposure on depression, while controlling for neuroticism-an established predictor of depressive symptoms. This study used data from 3,734 pairs of twins from the community-based University of Washington Twin Registry. Each twin pair was randomized with twin A in one subsample and twin B in the second subsample. The four-item Brief Resilient Coping Scale measured resilient coping. The two-item Patient Health Questionnaire measured depression. Multiple linear regression analyses were performed on each subsample, controlling for neuroticism. In addition to significant effects of neuroticism and trauma exposure on depression (p < .001), the effect of the interaction of resilient coping and trauma exposure on depression was significant in both subsamples (p < .01). High levels of resilient coping were associated with lower depression scores in the context of previous trauma exposure. Individuals high in resilient coping who experienced significant life traumas were less depressed after trauma exposure, even after controlling for neuroticism. Because coping skills may be learned, interventions that teach resilient coping to individuals with traumatic histories merit investigation. © 2016 Wiley Periodicals, Inc.

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.

Evidence for validity of the brief resilient coping scale in a young Spanish sample.

The aim of the present study was to provide evidence of validity of the Brief Resilient Coping Scale for use in Spanish young population. A total of 365 university students responded to the Spanish version of the BRCS as well as to other tools for measuring personal perceived competence, life satisfaction, depression, anxiety, negative and positive affect, and coping strategies. Confirmatory factor analysis confirmed the unidimensional structure of the scale. Internal consistency reliability and temporal stability through Cronbach's alpha and test-retest correlations, respectively, were comparable to those found in the initial validation of the tool. The BRCS showed positive and significant correlations with personal perceived competence, optimism, life satisfaction, positive affect (p < .01), and some coping strategies (p < .05). Significant negative correlations were observed with depression, anxiety and negative affect. (p < .01). Multiple regression analysis with stepwise method showed that positive affect, negative affect, optimism and problem solving explained 41.8% of the variance of the BRCS (p < .001). The Spanish adaptation of the BRCS in a young population is satisfactory and comparable to those of the original version and with the Spanish version adapted in an elderly population. This supports its validity as a tool for the assessment of resilient coping tendencies in young people who speak Spanish and offers researchers and professionals interested in this area of study a simple tool for assessing it.

Breast cancer survivors with lymphedema: glimpses of their daily lives.

Breast cancer survivors with lymphedema experience physical, psychosocial, and quality-of-life difficulties. Cancer treatment-related lymphedema often is viewed as a disabling condition, and that assumption has fostered an environment in which oncology nurses are not actively involved in the care of patients with lymphedema. Little is known about how breast cancer survivors with lymphedema structure their daily lives. This article describes an effort to determine whether lymphedema truly is a disabling condition by collecting symptom data and self-generated narratives from breast cancer survivors with lymphedema regarding their eating habits, daily activities, substance use, and future plans. Although the sample experienced multiple symptoms, lymphedema duration and degree of extracellular arm fluid did not appear to influence those symptoms. In addition, participants led full, rich, busy lives. The findings do not support the notion that patients with lymphedema live as disabled people. A disability model may not be optimal to guide research design or patient care; rather, a symptom management model better explains the findings and implies that active involvement by nurses in lymphedema patient care and education is indicated.

Voices from the shadows: living with lymphedema.

BACKGROUND: Breast cancer survivors with lymphedema face a lifetime of stressful physical and emotional symptoms and challenging self-care demands. An in-depth understanding of the perceptions and feelings surrounding life with lymphedema is critical to developing effective supportive care approaches. OBJECTIVE: The objective of the study was to explore perceptions and feelings related to lymphedema in breast cancer survivors. METHOD: The expressive writings of 39 individuals were evaluated for this descriptive qualitative study. Data were analyzed using conventional content analysis. RESULTS: Qualitative analyses produced 4 major themes: (1) marginalization and minimization, (2) multiplying losses, (3) yearning to return to normal, and (4) uplifting resources. Subthemes for each major theme were also identified. CONCLUSION: The lymphedema experiences of breast cancer survivors reveal perceptions of marginalization from healthcare providers who are not well informed about lymphedema management and minimizing its impact. Multiple distressing losses confront these patients on a daily basis, including body image disturbances, loss of functionality and control over time, permanent uncertainty, and adverse effects on relationships. The daily challenges of lymphedema often result in cumulative frustration and resentment that contribute to failure to perform self-care. Normalcy has been lost, never to return. These women find solace, encouragement, and hope to meet the challenges of lymphedema through support from others and their spiritual beliefs. IMPLICATIONS FOR PRACTICE: Healthcare providers need greater awareness of the physical and psychosocial effects of lymphedema in breast cancer survivors. Nurses have unique opportunities to serve as advocates for reducing perceived marginalization and promoting effective self-care and other activities that promote psychological well-being and reduce physical deterioration.

Psychological vulnerability predicts increases in depressive symptoms in individuals with rheumatoid arthritis.

BACKGROUND: Efficient measures are needed to identify individuals at risk for depression to optimize intervention efforts that can enhance health-related outcomes. OBJECTIVES: The purpose of this study was to examine the effectiveness of the six-item Psychological Vulnerability Scale (PVS) as a predictor of depressive symptoms and change in depressive symptoms while controlling for two established predictors of depression-arthritis helplessness (AHI) and functional impairment (FI). METHODS: Data from 125 patients with rheumatoid arthritis (73% women) were used in hierarchical regression analyses to examine whether the PVS could be used to predict unique variance in depressive symptoms (Center for Epidemiological Studies-Depression [CES-D]) cross sectionally (N = 125) and change in depressive symptoms (N = 93). RESULTS: The three-predictor cross-sectional model was highly significant, F(3, 121) = 25.6; p < .001, explaining 39% of the variance in CES-D scores assessed at the same point in time. Controlling for both AHI and FI, the PVS explained an additional 9.3% of the variance in CES-D scores. To examine changes in CES-D scores over a 1-year period, CES-D scores at the later time were regressed on CES-D scores from a year earlier. On the next two steps, AHI, FI, and PVS scores assessed a year earlier were entered into the model. The full model predicted 56% of the variance in depressive symptoms, F(4, 88) = 27.7, p < .001, with the PVS accounting for a unique 5.6% of the variance in change in CES-D scores. DISCUSSION: Because of its brevity, the PVS can be an efficient screening tool for individuals at risk for depression. More research is needed to substantiate the value of the PVS for identifying individuals who could benefit from interventions designed to prevent depression.

Adaptive coping with rheumatoid arthritis: the transforming nature of response shift.

OBJECTIVE: Qualitative investigations of patients' perspectives of coping can offer insights into a wide array of adaptive coping patterns selectively used to deal with illness-related challenges. The purpose of this qualitative study was to examine adaptive coping patterns reported by a sample of women with rheumatoid arthritis (RA). METHODS: Using thematic analysis, interviews from 19 participants were analysed until theoretical saturation was achieved. The interviews were coded, with narrative excerpts collated within each code, sorted by codes into potential themes, and then collated within identified themes. These themes were then further defined, providing specific adaptive coping strategies for each major theme. RESULTS: Major themes included accepting role limitations, reclaiming control, reframing their situation, and bolstering courage. Women described accepting more realistic performance standards, accepting their limitations and dependence on others, and altering their basis of self-worth. They reclaimed control of their lives by changing priorities, pacing themselves, being flexible, delegating to others, and setting appropriate boundaries. Reframing their situation enabled them to change their perspective, minimize threats from RA, re-prioritize their values, and find meaning and positive changes associated with their suffering. To bolster courage, they turned to a variety of sources for encouragement, including confidence from past successes, inspiring role models, and social support. CONCLUSIONS: The data reflect adaptive strategies similar to response shift processes. A link between response shift processes and higher levels of perceived control is discussed.

Effects of a cognitive-behavioral program for women with multiple sclerosis.

The purpose of this quasi-experimental study was to evaluate the effectiveness of a cognitive-behavioral intervention for women with multiple sclerosis (MS). Thirty-seven adult women with MS participated in a group-based intervention program titled "Beyond MS," which was led by master's-prepared psychiatric nurses. For participants, the program involved reading a manual and meeting for five weekly group sessions. Perceived health competence, coping behaviors, psychological well-being, quality of life, and fatigue were measured at four time periods: 5 weeks before the beginning of the intervention, immediately before the intervention, at the end of the 5-week intervention, and at a 6-month follow-up. There were significant improvements in the participants' perceived health competence (p < .01), indices of adaptive and maladaptive coping (p < .04), and most measures of psychological well-being (p < .05) from pre- to postintervention. The positive changes brought about by this relatively brief intervention program were maintained during the 6-month follow-up period. This cognitive-behavioral intervention has also been used effectively in the rheumatoid arthritis population and may be adaptable to benefit individuals with other chronic conditions.

Development and validation of the Emotional Intimacy Scale.

Although many measures have been developed to capture elements of social support, only a few include an assessment of emotional intimacy. Emotional intimacy involves a perception of closeness to another that allows sharing of personal feelings, accompanied by expectations of understanding, affirmation, and demonstrations of caring. The 5-item Emotional Intimacy Scale (EIS) was developed to assess the emotional intimacy component in one close relationship. A sample of 90 women with rheumatoid arthritis was used to assess the reliability and validity of the scale. Internal consistency and test-retest reliability for a 6-week period were .88 and .85, respectively. To assess construct validity, significant, positive correlations were obtained between the EIS and measures of social support, self-efficacy, perceived health competence, reappraisal coping behaviors, life satisfaction, and positive affect. Significant negative correlations were obtained between the EIS and perceived stress levels, helplessness, negative pain coping behaviors, pain, and fatigue. In support of criterion-related validity, the EIS predicted outcomes from an intervention program. To further assess criterion-related validity, scores on the EIS and helplessness predicted scores on two indicators of psychological well-being that measured positive affect and life satisfaction. The EIS is a brief measure of emotional intimacy with good psychometric properties.

The development and psychometric evaluation of the Brief Resilient Coping Scale.

This article introduces the Brief Resilient Coping Scale (BRCS), a 4-item measure designed to capture tendencies to cope with stress in a highly adaptive manner. Two samples of individuals with rheumatoid arthritis (ns = 90 and 140) provide evidence for the reliability and validity of the BRCS. The BRCS has adequate internal consistency and test-retest reliability. Convergent validity of the scale is demonstrated by predictable correlations with measures of personal coping resources (e.g., optimism, helplessness, self-efficacy), pain coping behaviors, and psychological well-being. Resilient coping, as assessed by the BRCS, also buffers the effects of high levels of arthritis-related and non-arthritis-related stressors on depressive symptoms. The sensitivity of the BRCS to changes associated with a cognitive-behavioral intervention is also demonstrated. The BCRS may be useful for identifying individuals in need of interventions designed to enhance resilient coping skills.