Family Members End of Life Decision Making Experiences

poster abstractSignificance: The purpose of this study was to explore the experiences of individuals who accept the role of decision maker for a family member at the end of life, particularly focusing on their perspectives on their interactions with clinicians and the impact these interactions made on their decision-making process. With the completion of this study, the hopes are to develop a better understanding of the needs and of individuals making decisions for their family members at their end of life to ultimately improve the way clinicians interact with them. Objective: To understand family members’ experiences with end of life decision making including how clinicians interacted with them. Method: Individual interviews were conducted with 10 family members who contributed to making an end-of-life decision for a family member. All individuals who were 18 or older, English speaking, and willing to discuss their experiences were eligible for the study. The participants were privately interviewed over the phone. For analysis of the data, a coding scheme was constructed by selecting significant components of the family members’ experiences. The texts of the interviews were transcribed and coded allowing for the review of commonalities across the experiences. Measurements: Qualitative interviews were used to describe experiences using a semi-structured interview guide. The interview guide was developed using the Ottawa Decision Support Framework, a guide for clients to use in decision-making regarding the health or social aspects of their life. This framework allows the interview and data to focus on evaluating the needs of the individual. Main Results: Pending – data analysis is underway Conclusions: Results will be used to understand needs and improve interactions with families making end of life decisions

A Review of Adherence to Oral Endocrine Therapy for Breast Cancer

poster abstractEndocrine therapy is a critical part of adjuvant therapy in women with hormone receptor-positive breast cancer. Endocrine therapies include Tamoxifen and the aromatase inhibitors, such as Anastrozole, Letrozole, and Exemestane. Women are non-adherent to these therapies following treatment for breast cancer even though they have been shown to reduce the risk of recurrence and death. Understanding adherence is important to establishing the extent of the clinical problem and need for possible interventions. The purpose of this research was to review published research on oral endocrine therapy adherence in women who have been diagnosed with breast cancer. The PubMed search engine with MeSH terms were used to identify relevant literature. Information on adherence definitions, measures, timing of assessments, and specific medications prescribed was abstracted into a table and evaluated. Findings demonstrated varied definitions and measures were used. Adherence was poorly differentiated from failure to initiate medication or medication persistence. Adherence to oral endocrine therapy post treatment for breast cancer is a complex phenomenon. More research is needed to facilitate the development of patient tailored complex interventions by exploring patients' needs and underlying processes influencing medication non-adherence

Somatosensory Amplification And Hot Flashes In Breast Cancer Survivors And Healthy Menopausal Women

poster abstractSomatosensory amplification is a cognitive explanation of the tendency to sense normal somatic and visceral sensations as intense, noxious, and disturbing. An individual with somatosensory amplification takes existing physical sensations and/or conditions and focuses on them to the point that the perception of these often-normal sensations becomes overly bothersome and intense. The goal of this study is to describe the concept of somatosensory amplification and its role in the menopausal symptom experience of two target groups: menopausal breast cancer survivors and healthy midlife women. This is a cross-sectional, descriptive, correlational study. This study looked at baseline data containing the demographics, somatosensory amplification data, and mood, sleep and hot flash data (frequency, bother, control, interference, and perceived control) of 98 breast cancer survivors and 135 midlife women. Each item on the Somatosensory Amplification Scale (SSAS) was looked at in order to determine if there is a significant difference between healthy menopausal women and menopausal breast cancer survivors. The total SSAS scores were also analyzed to determine if there was a difference between the two groups. Midlife women had a higher total SSAS score than breast cancer survivors, but the group differences in total scores and individual items were not significant. Somatosensory amplification was significantly correlated with hot flash interference, perceived control of hot flashes, mood and sleep. The outcomes offer more insight into how somatosensory amplification can affect the every day lives of menopausal women and the perceived control they have over their hot flashes. Findings may prove to be useful in selecting more appropriate and relevant interventions that have the potential of improving quality of life of menopausal women

Information Needs of Young Breast Cancer Patients with Early Menopause Symptoms

poster abstractBreast cancer treatments can cause amenorrhea, infertility, and many menopausal symptoms; there is increasing concern for improvements in quality of life for this population. Evidence suggests that premenopausal women with breast cancer do not get their information needs met regarding effects of treatment. The purpose of this study is to examine the information needs of this population, the best times to receive information, and how these two factors affect decision-making related to treatment. The gaps in research include no studies in the U.S. addressing the information needs of young breast cancer patients, and international data suggesting a lack of information for this population. The Ottawa Decision Support Framework (ODSF) is an evidence-based theory that acts as a guide for patients to use in decision-making regarding menopause. One of the components is relevant to my research: evaluating the needs of patients to discover needs relating to decision-making. It is necessary to understand the needs of patients in order to provide all necessary information and ease their individual decision-making processes. Using a qualitative, descriptive design, 5 women were enrolled who were: diagnosed and treated for breast cancer, premenopausal at diagnosis (aged 21 to 45), reporting hot flashes, night sweats or other menopausal symptoms, and English speaking. After screening eligible and consenting to the study, the women were asked to provide demographic and cancer treatment information and complete a semistructured interview. Interviews were tape-recorded and transcribed. A qualitative analysis of the data is currently underway. Results from this study are anticipated to provide an outline of information breast cancer patients will need before treatment decisions are made. These findings will help medical professionals deliver valuable education and treatment options to the individual patient at the most beneficial time

Neonatal Intensive Care Unit Nurses Experiences Regarding Parent Decision Making For Extremely Low Birth Weight Infants

poster abstractNeonatal intensive care unit (NICU) nurses play an important role in caring for extremely low birth weight infants (ELBW) and these patients are at a much greater risk of abnormal development. The NICU is unique in that the infant’s parents are their primary advocates, but they lack the medical background to comprehend their child’s condition. Parents also experience high anxiety and stress; consequently, aspects of decision-making may be overlooked due to inadequate amounts of information. NICU nurses must provide accurate and consistent information and emotional support to ELBW infant parents to help with decision-making. The purpose of this study is to describe NICU nurses’ experiences in aiding parents in decision-making regarding their ELBW infant and to identify if a visual aid would be useful during this difficult process. This research is based on 2 of 3 components of the Ottawa Decision Support Framework (ODSF): the evaluation of the needs of the healthcare team necessary for decision making and the evaluation of the healthcare team when providing individualized aid to parents. Using a qualitative descriptive design, five English-speaking nurses with at least one year of experience in the NICU were interviewed. The nurses ranged from 28-55 years of age and had a bachelor’s or master’s degree in nursing. Prior to the semi-structured interview, consent to participate was acknowledged and eligibility and demographic forms were completed. All interviews were tape-recorded and transcribed, and they were qualitatively analyzed. Findings will be used to evaluate nurses’ experiences, including how prepared they felt in providing information and support to parents, and to determine whether visual aids were used or would be useful to help nurses’ communication and parents’ decision-making

Leadership corner: COVID courage awardees

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An Arts-Based Educational Exhibit on Menopausal Hot Flashes

Objective: The aim of this study was to describe the development process, science, and symbolism of an arts-based educational exhibit designed to address myths, misinformation, negative imagery, and use of unproven treatments related to menopausal hot flashes. Methods: The development process included iterative and informal feedback from a variety of individuals, a partnership with an experienced exhibit designer, and collaborations between artists and scientists. Results: The resulting exhibit creates an environment where the public is immersed in accurate information about hot flashes. Although based on an iterative process, the resulting exhibit content reflects an estimated 500+ scientific studies, including those referenced in The North American Menopause Society position statements on hormone and nonhormone management of hot flashes. The seven main exhibit pieces convey scientific information and symbolize various aspects of women's experiences. Conclusions: This innovative exhibit has high potential to be a disruptive innovation to address the preponderance of myths, misinformation, and negative imagery surrounding menopausal hot flashes and potentially decrease the use of unproven therapies

Oral Endocrine Therapy Nonadherence, Adverse Effects, Decisional Support, and Decisional Needs in Women With Breast Cancer

BACKGROUND: Oral endocrine therapy (OET) such as tamoxifen or aromatase inhibitors reduces recurrence and mortality for the 75% of breast cancer survivors (BCSs) with a diagnosis of estrogen receptor-positive breast cancer. Because many BCSs decide not take OET as recommended because of adverse effects, understanding BCSs' decisional supports and needs is foundational to supporting quality OET decision making about whether to adhere to OET. OBJECTIVE: The aim of this study was to examine literature pertaining to OET nonadherence and adverse effects using the Ottawa Decision Support Framework categories of decisional supports and decisional needs because these factors potentially influence OET use. METHODS: A systematic literature search was performed in PubMed and CINAHL using combined search terms "aromatase inhibitors and adherence" and "tamoxifen and adherence." Studies that did not meet criteria were excluded. Relevant data from 25 publications were extracted into tables and reviewed by 2 authors. RESULTS: Findings identified the impact of adverse effects on OET nonadherence, an absence of decisional supports provided to or available for BCSs who are experiencing OET adverse effects, and the likelihood of unmet decisional needs related to OET. CONCLUSIONS: Adverse effects contribute to BCSs decisions to stop OET, yet there has been little investigation of the process through which that occurs. This review serves as a call to action for providers to provide support to BCSs experiencing OET adverse effects and facing decisions related to nonadherence. IMPLICATIONS FOR PRACTICE: Findings suggest BCSs prescribed OET have unmet decisional needs, and more decisional supports are needed for BCSs experiencing OET adverse effects

The Oral Endocrine Therapy Decision Making Process in Women with Breast Cancer

poster abstractBackground: Oral endocrine therapy (OET) is life-saving for women with estrogen receptorpositive (ER+) breast cancer because it reduces the incidence of recurrence and mortality. An estimated 75% of women with breast cancer receive a recommendation for life-saving OET such as Tamoxifen or aromatase inhibitors. OET adherence is not a single event decision, but rather is a psychosocial process unfolding over time involving an initial decision to initiate therapy or not, and for those who do initiate OET, several additional decisions. Our understanding of OET decision making is limited, but non-adherence is a common response to OET side effects. By obtaining first-person narratives from women who have been prescribed OET and report experiencing side effects, an explanatory framework can be developed that describes their decision making processes. Purpose: The purpose of this grounded theory study is to develop an explanatory framework of decision making by women with ER+ breast cancer who report experiencing OET side effects. Aims: Specific aims are (1) describe responses to side effects among women with ER+ breast cancer, (2) identify common decisional needs of women with ER+ breast cancer who report experiencing OET side effects, (3) identify common decisional supports sought by and provided to women with ER+ breast cancer who report experiencing OET side effects, and (4) describe how women with ER+ breast cancer who report experiencing OET side effects make decisions about initiating, continuing, switching, and/or discontinuing OET. Methods: In this study, 30 women with ER+ breast cancer who report experiencing OET side effects will take part in a single, face-to-face, audio-recorded interview. Demographic and breast cancer treatment information will be collected and then analyzed using descriptive statistics. A constant comparative method of inductive and deductive processes will be used to discover common patterns and variations in the narrative data. The final products of the analysis will include typologies of responses to side effects, common decisional needs, and common decisional support as well as a framework of common trajectories of decision making related to OET in women who report experiencing side effects. Findings: Findings to date will be discusse

What women say about their dysmenorrhea: a qualitative thematic analysis

Background Dysmenorrhea is highly prevalent and is the leading cause of absence from school and work among women of reproductive age. Evidence suggests that dysmenorrhea may also be a risk factor for other chronic pain conditions. Limited research has examined women’s experience with dysmenorrhea using qualitative data. Research is warranted to address issues and needs that are important from women’s own perspectives. Therefore, the purpose of this study was to describe women’s salient thoughts about their experiences of dysmenorrhea. Methods We analyzed data collected from an open-ended question within a cross-sectional survey study conducted in the United States. Using qualitative thematic analysis, free text responses to a question asking women to share their experience with dysmenorrhea were analyzed. Results The sample consisted of 225 women who provided valid responses to the open-ended question. Six themes were identified: (1) The dysmenorrhea symptom experience varied among women; (2) The dysmenorrhea symptom experience varied across time, (3) A variety of factors influenced the dysmenorrhea symptom experience, (4) Dysmenorrhea symptoms could have a negative impact on the women’s daily lives, (5) Dysmenorrhea was not seen as a legitimate health issue by the women, health care providers, or society, and (6) Treatment for women with dysmenorrhea varied in acceptability and effectiveness. Conclusions The findings of this study have important implications for dysmenorrhea symptom assessment and the development of personalized interventions to support dysmenorrhea management