The Female Self-Advocacy in Cancer Survivorship Scale: A validation study.

AIM: To develop and psychometrically test the validity of the Female Self-Advocacy in Cancer Survivorship Scale. BACKGROUND: Female cancer survivors need to self-advocate to overcome challenges associated with cancer yet no valid measure of self-advocacy exists. DESIGN: Instrument development. Mixed-mode cross-sectional survey design. PARTICIPANTS: We recruited adult females (18+ years; N = 317) with a history of invasive cancer from local and national tumour registries and advocacy organizations to complete online or paper questionnaires. METHODS: Between July 2014 - March 2015 to evaluate the construct validity based on evidence of the scale's: (1) internal structure consistent with the underlying model of self-advocacy; (2) sensitivity to differences between groups known to differ in self-advocacy skills; (3) relationships between self-advocacy and key potential predictors (openness and conscientiousness; information engagement; social support) and outcomes (symptom burden and healthcare utilization); (4) relationships between self-advocacy and related concepts (patient activation; self-advocacy within another patient population); and (5) relationships between self-advocacy and criterion measures. Analyses included an exploratory factor analysis, t tests, and bivariate correlations using validated, reliable measures for constructs. RESULTS: Evidence from all five hypotheses supported the construct validity of the Female Self-Advocacy in Cancer Survivorship Scale. The factor analysis confirmed the three underlying dimensions of self-advocacy resulting in a 20-item measure with strong internal consistency that explained almost half of response variance. CONCLUSION: The Female Self-Advocacy in Cancer Survivorship Scale is a valid, reliable measure of how well adult female cancer survivors can get their needs met in the face of adversity.

Symptom management in women with recurrent ovarian cancer: Do patients and clinicians agree on what symptoms are most important?

OBJECTIVE: We sought to compare symptoms identified as a priority by patients with recurrent ovarian cancer to symptoms most frequently documented by their clinicians, and examine the association between clinician documentation of symptoms and subsequent clinical intervention. METHODS: Single-institution, retrospective chart review of patients enrolled in WRITE Symptoms Study (GOG 259), a randomized controlled trial of internet-based recurrent ovarian cancer symptom management. As part of the trial, women completed the Symptom Representation Questionnaire for 28 symptoms and selected 3 priority symptoms (PS). We compared patient-reported PS to clinician documentation of symptoms and interventions over the time period corresponding to study enrollment. RESULTS: At least one PS was documented in 92% of patients. Of 150 PS reported by patients, 53% were never documented by clinicians; these symptoms tended to be less directly related to disease or treatment status. Symptoms not identified by patients as PS were frequently documented by clinicians; these symptoms tended to relate to physiologic effects of disease and treatment toxicity. 58% of patients had at least one PS intervention. PS intervened for were documented at 2.58 visits vs 0.50 visits for PS not receiving intervention (p≤0.0001). CONCLUSIONS: Discordance was identified between symptoms reported by patients as important and symptoms documented by clinicians. Symptoms more frequently documented were also more frequently intervened for. Our study illustrates the need to improve identification of symptoms important to patients, and suggests that improving communication between patients and clinicians could increase intervention rates to enhance quality of life in women with recurrent ovarian cancer.

Nausea as a sentinel symptom for cytotoxic chemotherapy effects on the gut-brain axis among women receiving treatment for recurrent ovarian cancer: an exploratory analysis.

PURPOSE: Nausea is a common and potentially serious effect of cytotoxic chemotherapy for recurrent ovarian cancer and may function as a sentinel symptom reflecting adverse effects on the gut-brain axis (GBA) more generally, but research is scant. As a first exploratory test of this GBA hypothesis, we compared women reporting nausea to women not reporting nausea with regard to the severity of other commonly reported symptoms in this patient population. METHODS: A secondary analysis of data systematically collected from women in active chemotherapy treatment for recurrent ovarian cancer (n = 158) was conducted. The Symptom Representation Questionnaire (SRQ) provided severity ratings for 22 common symptoms related to cancer and chemotherapy. Independent sample t tests and regression analyses were used to compare women with and without nausea with regard to their experience of other symptoms. RESULTS: Nausea was reported by 89 (56.2 %) women. Symptoms that were significantly associated with nausea in bivariate and regression analyses included abdominal bloating, bowel disturbances, dizziness, depression, drowsiness, fatigue, headache, lack of appetite, memory problems, mood swings, shortness of breath, pain, sleep disturbance, urinary problems, vomiting, and weight loss. Symptoms that were not associated with nausea included hair loss, numbness and tingling, sexuality concerns, and weight gain. CONCLUSIONS: Nausea experienced during chemotherapy for recurrent ovarian cancer may be an indicator of broader effects on the gut-brain axis. A better understanding of the mechanisms underlying these effects could lead to the development of novel supportive therapies to increase the tolerability and effectiveness of cancer treatment.

Patient Education vs. Patient Experiences of Self-advocacy: Changing the Discourse to Support Cancer Survivors.

A growing emphasis on patient self-advocacy has emerged in the public discourse on cancer survivorship. This discourse shapes patients' conceptualizations about self-advocacy and in turn influences their health care attitudes and behaviors. The purpose of this discourse analysis is to explore the language of self-advocacy by comparing a published self-advocacy guide with the lived experiences of women with ovarian cancer. Data sources include (1) a self-advocacy patient education guide published by the National Coalition for Cancer Survivorship and (2) transcripts of focus groups conducted with ovarian cancer survivors. Discourse analysis techniques were used to take a close look at the language used by both to uncover the meaning each group ascribed to self-advocacy. Challenges and inconsistencies were noted between the patient education guide and transcripts including viewing self-advocacy as a skill set to assert one's needs as opposed to a means by which to preserve a positive attitude and maintain a trusting relationship with health care providers, respectively. Some women saw themselves as self-advocates yet struggled to locate relevant health information and hesitated to upset their relationship with their health care providers. This analysis highlights tensions between the discourses and points to ways in which patient education materials can be adjusted to support cancer survivors in advocating for their needs according to their unique situations and preferences.

Self-advocacy and cancer: a concept analysis.

AIM: To report an analysis of the concept of self-advocacy among individuals with cancer to clarify its meaning, to differentiate this meaning with related concepts, and to unify understanding of the concept in cancer research and practice. BACKGROUND: Cancer survivors are increasingly required to assume an active role in their health care. A thorough analysis of how survivors advocate for themselves is a crucial aspect in supporting survivors' ability to engage and manage their care throughout all stages of cancer survivorship. DESIGN: Walker and Avant's eight-step process of conducting a concept analysis was used. DATA SOURCES: PubMed, PsycINFO, and CINAHL databases were searched for articles, reviews, editorials, and grey literature directly addressing self-advocacy. REVIEW METHODS: A broad inquiry into the literature from 1960 to 2012 that produces a definition of self-advocacy. Model and contrary cases of self-advocacy demonstrate the concept's application and intricacies. RESULTS: Antecedents to self-advocacy include particular personal characteristics, learned skills, and attainable support. The essential element of self-advocacy and what differentiates it from related concepts, is the internalization of these antecedent resources into self-advocacy thoughts and actions while incorporating personal values and priorities in a way that upholds the survivors' goals and beliefs. A full realization of self-advocacy facilitates a cancer survivor attaining a strong self-concept, sense of control, and adaptation to a life with cancer. CONCLUSIONS: Self-advocacy is a process of internalizing skills and resources to act in a way that supports survivors' needs and goals.

Mothering With Advanced Ovarian Cancer: "You've Got to Find That Little Thing That's Going to Make You Strong".

BACKGROUND: Mothers with ovarian cancer are at risk of experiencing additional demands given their substantial symptom burden and accelerated disease progression. OBJECTIVE: This study describes the experience of mothers with ovarian cancer, elucidating the interaction between their roles as mothers and patients with cancer. METHODS: We conducted a secondary analysis of focus groups with women with advanced ovarian cancer. Using descriptive coding, we developed a coding framework based on emerging findings and group consensus. We then identified higher-order themes capturing the breadth of experiences described by mothers with ovarian cancer. RESULTS: Eight of the 13 participants discussed motherhood. The mean age of participants was 48.38 (SD, 7.17) years. All women were white (9/9), most had some college education (6/9), and the majority were married (5/9). Mean time since diagnosis was 7.43 (SD, 4.69) months; more than half of women (5/9) were currently receiving treatment. Themes and exemplar quotes reflected participants' evolving self-identities from healthy mother to cancer patient to woman mothering with cancer. Subthemes related to how motherhood was impacted by symptoms, demands of treatment, and the need to gain acceptance of living with cancer. CONCLUSIONS: The experience of motherhood impacts how women experience cancer and how they evolve as survivors. Similarly, cancer influences mothering. IMPLICATIONS FOR PRACTICE: Healthcare providers should understand and address the needs of mothers with ovarian cancer. This study adds to the limited literature in this area and offers insight into the unique needs faced by women mothering while facing advanced cancer.

Nursing's role in leading palliative care: A call to action.

Palliative care aims to alleviate the suffering of patients with life-limiting illness while promoting their quality of life. In this call to action commentary, we review the ways in which nursing care and palliative care align, describe barriers to nurses engaging in palliative care, and provide specific recommendations for nurses involved in education, training, and administration to assist nurses at all levels of practice to engage in palliative care for their patients.

Symptom Burden and Self-Advocacy: Exploring the Relationship Among Female Cancer Survivors

BACKGROUND: Although patient self-advocacy is a critical component of patient-centered care, the association between symptom burden and self-advocacy has received little attention. 
. OBJECTIVES: This analysis evaluates the degree to which self-advocacy is associated with symptom burden among women with a history of cancer. 
. METHODS: Participants completed online or paper questionnaires. Descriptive statistics and ordinary least squares regression models were used to analyze the association between the three dimensions of self-advocacy and two dimensions of symptom burden. FINDINGS: Participants reported moderate levels of symptom burden. Fatigue, disturbed sleep, and memory problems were most common. Informed decision making was positively associated with symptom burden and participants' burden across the three most severe symptoms. Effective communication was negatively associated with total symptom burden and the degree to which symptoms interfered with daily life.

Mind the Mode: Differences in Paper vs. Web-Based Survey Modes Among Women With Cancer.

CONTEXT: Researchers administering surveys seek to balance data quality, sources of error, and practical concerns when selecting an administration mode. Rarely are decisions about survey administration based on the background of study participants, although socio-demographic characteristics like age, education, and race may contribute to participants' (non)responses. OBJECTIVES: In this study, we describe differences in paper- and web-based surveys administered in a national cancer survivor study of women with a history of cancer to compare the ability of each survey administrative mode to provide quality, generalizable data. METHODS: We compared paper- and web-based survey data by socio-demographic characteristics of respondents, missing data rates, scores on primary outcome measure, and administrative costs and time using descriptive statistics, tests of mean group differences, and linear regression. RESULTS: Our findings indicate that more potentially vulnerable patients preferred paper questionnaires and that data quality, responses, and costs significantly varied by mode and participants' demographic information. We provide targeted suggestions for researchers conducting survey research to reduce survey error and increase generalizability of study results to the patient population of interest. CONCLUSION: Researchers must carefully weigh the pros and cons of survey administration modes to ensure a representative sample and high-quality data.

Creating Individualized Symptom Management Goals and Strategies for Cancer-Related Fatigue for Patients With Recurrent Ovarian Cancer.

BACKGROUND: Cancer-related fatigue (CRF) is one of the most common symptoms among women with recurrent ovarian cancer, yet it remains extremely difficult to manage. Symptom management typically requires patients to set goals and strategies to manage their CRF, but little is known about how to create individualized CRF symptom management goals and strategies. OBJECTIVE: The aim of this study was to describe cancer patients' goals and strategies for managing CRF along with their process of individualizing both. METHODS: This study is a qualitative analysis with supportive quantitative description of a Web-based symptom management randomized clinical trial, the WRITE (Written Representational Intervention to Ease) Symptoms study. Researchers conducted a content analysis on 47 participants' CRF symptom care plans to identify common themes in participants' goals, categorize strategies, and describe the individualization process. RESULTS: Four general themes were identified among participants' CRF goals: (1) enjoying time with friends and family, (2) doing the things I enjoy, (3) having energy to be physically active, and (4) keeping up with what I need to do. Cancer-related fatigue strategies were categorized into 13 groups including conserving energy, increasing activity, and talking with healthcare providers. A multistep individualization process resulted in personally meaningful strategies. CONCLUSIONS: The process by which participants individualized their CRF strategies consisted of identifying, confirming, testing, and evaluating different CRF strategies and resulted in refined, specific, and individualized strategies intended to eventually ensure participants achieve their goal. IMPLICATIONS FOR PRACTICE: Clinicians can assist patients in individualizing their CRF goals and strategies. Individualization of CRF goals and strategies assists patients in visualizing how improving CRF will impact their life.

Not the last word: dissemination strategies for patient-centred research in nursing.

INTRODUCTION: Research results hold value for many stakeholders including researchers, patient populations, advocacy organizations, and community groups. The aim of this study is to describe our research team's systematic process to designing a dissemination strategy for a completed research study. METHODOLOGY: We organized a dissemination event to feed the results of our study to participants and stakeholders and collect feedback regarding our study. We applied the Agency for Healthcare Research and Quality's dissemination framework to guide the development of the event and collected participant feedback during the event. RESULTS: We describe our dissemination strategy along with attendees' feedback and suggestions for our research as an example of a way to design a patient- and community-focused dissemination. We explain the details of our dissemination strategy including (a) our process of reporting a large research study into a stakeholder event, (b) stakeholder feedback collected at the event, and (c) the translation of feedback into our research team's research. We also describe challenges encountered during the dissemination process and ways to handle issues such as logistics, funding, and staff. CONCLUSIONS: This analysis provides key insights and practical advice for researchers looking for innovative ways to disseminate their findings within the lay and scientific communities.

Coping in Patients With Incurable Lung and Gastrointestinal Cancers: A Validation Study of the Brief COPE.

CONTEXT: Patients with incurable cancer engage in several coping styles to manage the impact of cancer and its treatment. The Brief COPE is a widely used measure intended to capture multiple and distinct types of coping. The Brief COPE has not been validated among patients with incurable cancer. OBJECTIVES: We sought to validate seven subscales of the Brief COPE in a large sample of patients newly diagnosed with incurable lung and noncolorectal gastrointestinal cancers (N = 350). METHODS: Participants completed the Brief COPE and measures assessing quality of life (QOL) (Functional Assessment of Cancer Therapy-General) and psychological distress (Hospital Anxiety and Depression Scale) within eight weeks of diagnosis of incurable cancer. We evaluated the psychometric properties of the Brief COPE using a confirmatory factor analysis and tests of correlation with the QOL and distress scales. RESULTS: The Brief COPE factors were consistent with the original subscales, although the Behavioral Disengagement Scale had low internal consistency. Factors showed anticipated relationships with QOL and distress measures, except emotional support coping, which was correlated with increased depression and anxiety. We also conducted an exploratory high-order factor analysis to determine if subscales' score variances grouped together. The high-order factor analysis resulted in two factors, with active, emotional support, positive reframing, and acceptance loading onto one factor and denial and self-blame loading onto the second. CONCLUSION: The selected subscales of the Brief COPE are appropriate measures of coping among individuals newly diagnosed with incurable lung and gastrointestinal cancers.

Theoretical to Tangible: Creating a Measure of Self-Advocacy for Female Cancer Survivors.

BACKGROUND AND PURPOSE: Self-advocacy is well appreciated but poorly defined concept in oncology. METHODS: The development of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale's theoretical underpinnings and item development led to evaluations of the measure's content validity and reliability. RESULTS: The construct of self-advocacy contains 3 subdimensions with 57 Likert-type self-report items. Content validity results (S-CVI = 0.81 and S-CVI/UA = 0.83) indicated strong relevancy of items. Reliability results for each of the 3 subdimensions supported the consistency of the FSACS Scale scores, with strong internal consistency (Cronbach's alphas = .88, .81, and .90) and test-retest reliability (PPMC r = .85, .97, and .88). CONCLUSIONS: The FSACS Scale captures the construct of self-advocacy, and its scores show strong reliability.

Measurements in quantitative research: how to select and report on research instruments.

Measures exist to numerically represent degrees of attributes. Quantitative research is based on measurement and is conducted in a systematic, controlled manner. These measures enable researchers to perform statistical tests, analyze differences between groups, and determine the effectiveness of treatments. If something is not measurable, it cannot be tested.

A literary analysis of global female identity, health, and equity.

Females' experiences of identity, health, and equity share similar features around the world. This literary analysis describes the narratives of 4 female protagonists from popular fiction novels to identify similarities between their personal and contextualized experiences. The impact these private realities and public structures have on female health will be used to demonstrate the universal ecological threats to women's health. In conclusion, we offer suggestions on how to incorporate the shared female movement from domination and separation toward liberation and connection into modern health care practices that emphasize shared decision making, open communication, and social activism.

Ovarian cancer survivors' experiences of self-advocacy: a focus group study.

PURPOSE/OBJECTIVES: To explore ovarian cancer survivors' experiences of self-advocacy in symptom management. RESEARCH APPROACH: Descriptive, qualitative. SETTING: A public café in an urban setting. PARTICIPANTS: 13 ovarian cancer survivors aged 26-69 years with a mean age of 51.31. METHODOLOGIC APPROACH: Five focus groups were formed. Focus group discussions were audio recorded and transcribed verbatim. The content was analyzed using the constant comparison method with axial coding. In-depth interviews with 5 of the 13 participants occurred via telephone one to five months after each focus group meeting to clarify and expand on identified themes. Preliminary findings were shared with all participants for validation. FINDINGS: Two major themes emerged from the data: (a) knowing who I am and keeping my psyche intact, and (b) knowing what I need and fighting for it. Exemplar quotations illustrate the diverse dimensions of self-advocacy. In addition, a working female-centric definition of self-advocacy was attained. CONCLUSIONS: Women have varying experiences with cancer- and treatment-related symptoms, but share a common process for recognizing and meeting their needs. Self-advocacy was defined as a process of learning one's needs and priorities as a cancer survivor and negotiating with healthcare teams, social supports, and other survivors to meet these needs. INTERPRETATION: This phenomenologic process identified key dimensions and a preliminary definition of self-advocacy that nurses can recognize and support when patients seek and receive care consistent with their own needs and preferences. KNOWLEDGE TRANSLATION: Self-advocacy among female cancer survivors is a process of recognizing one's needs and priorities and fighting for them within their cancer care and life. Practitioners can support female cancer survivors through the process of self-advocacy by providing them with skills and resources in making informed choices for themselves.