“A peculiar time in my life”: making sense of illness and recovery with gynaecological cancer

Purpose: Worldwide there are nearly 1.1 million new cases of gynaecological cancer annually. In England, uterine, ovarian and cervical cancers comprize the third most common type of new cancer in women. Research with gynaecological cancer patients within 6 months of diagnosis is rare, as is data collection that is roughly contemporaneous with treatment. Our aim was to explore the experiences of women who were, at study entry, within 6 weeks of surgery or were undergoing chemotherapy or radiotherapy. Methods: An interpretative phenomenological analysis (IPA) of data from 16 women in five focus groups was conducted in the UK, exploring women’s experiences of being diagnosed with and treated for gynaecological cancer. Results: Participants conceptualized their experiences temporally, from the shock of diagnosis, through their cancer treatment, to thinking about recovery. They tried to make sense of diagnosis, even with treatment being complete. In the context of the Self-Regulation Model, these women were struggling to interpret a changing and multi-faceted illness identity, and attempting to return to pre-illness levels of health. Conclusions: This study adds to this under-studied time period in cancer survivorship. The results suggest that survivors’ goals may change from returning to pre-illness status to reformulating goals as survival time increases.N/

Cognitive Issues in Childhood Cancer Survivors and Related Parental Perceptions and Behaviors: An Integrative Review of Literature

Background: Survivorship of childhood cancer is often accompanied by neurocognitive late-effects (NCLE) related to the disease and/or it’s associated treatment regimes. Objectives: The primary purpose of this integrative literature review was to examine NCLE in pediatric cancer survivors and identify parental perceptions and behaviors that correlated to cognitive dysfunction in their children. Method: An integrative literature review was completed utilizing searches in PubMed, CINAHL Complete, and PsycINFO. Some search terms included “childhood cancer”, “survivor”, “cognition”, “cognitive disorder”, “neurocognitive”, “late-effects”, “child(ren)”, “parent(s)”, and “perception”. Results: Analysis of ten predominant methods of neurocognitive evaluation yielded five major cognitive deficit measures in pediatric cancer survivors: attention, working memory, processing speed, full scale IQ, and academic ability. Further analysis determined that parents exhibit five distinct types of perceptions and behaviors related to NCLE. Conclusion: The identification of those major NCLE measurements, cognitive deficit trends, and correlating parental behaviors and perceptions could have significant implications for how cognitive deficits in childhood cancer survivors are treated within the family dynamic in the future

Common adverse effects of novel therapies for multiple myeloma (MM) and their self-management strategies

MM has undergone a surge in novel therapies to treat the disease over the past decade. It is vital to educate patients on the common adverse effects of these new treatments, as well as the self-management strategies that can be implemented to maintain and promote their quality of life

Psychological and psychosocial deficits among pediatric survivors of hematological neoplasms and their risk factors

Advances in cancer treatments have led to a greater survival rate of patients with pediatric hematological cancers. The goal of this integrative literature review was to identify the post therapeutic psychological and social deficits and consequences experienced by pediatric survivors of hematological cancers and synthesize their risk factors

Guidelines for screening and management of late and long-term consequences of myeloma and its treatment

A growing population of long-term survivors of myeloma is now accumulating the ‘late effects’ not only of myeloma itself, but also of several lines of treatment given throughout the course of the disease. It is thus important to recognise the cumulative burden of the disease and treatment-related toxicity in both the stable and active phases of myeloma, some of which is unlikely to be detected by routine monitoring. We summarise here the evidence for the key late effects in long-term survivors of myeloma, including physical and psychosocial consequences (in Parts 1 and 2 respectively), and recommend the use of late-effects screening protocols in detection and intervention. The early recognition of late effects and effective management strategies should lead to an improvement in the management of myeloma patients, although evidence in this area is currently limited and further research is warranted

Development and testing of cancer treatment shared decision-making scale for nurses (SDMS-N)

Background: Shared decision-making (SDM) has emerged as the preferred model for decision-making in treatment decisions for cancer patients. Patient outcomes are maximized when this model is used since the patient is more engaged and empowered to be a part of their care. Yet, there are many barriers to participation in SDM that must be overcome from the patient, practitioner, and structural perspectives. Oncology nurses are crucial in the SDM process and tend to have a higher level of involvement relative to their counterparts in other specialties. However, many of these nurses do not feel competent or comfortable participating in SDM due to a variety of reasons such as level of training (or lack thereof), differences in communication skills and styles, and organizational environmental challenges. It is important to find a way to accurately measure nurses competency in SDM since they are the ones spending the lion s share of time with patients and need to have an active role in the decision-making process. Theoretical Framework: The framework for SDM has evolved over the years to encompass a greater circle of participants in the model. No longer is it just the dyad of patient and practitioner, but rather it now includes individuals such as family members, nurses, and other clinicians (e.g., occupational and physical therapists, specialists). The framework was updated to reflect current practice and reflects a dynamic process with detailed steps involved with SDM that can impact day-to-day practice (Charles, Gafni, & Whelan, 1999). Methods: This study will utilize a descriptive online survey and the SDMS-N tool will be sent to oncology nurses who are part of the Chicago Chapter of the Oncology Nursing Society. The survey will measure 23 key variables within three domains of nursing practice: knowledge, attitudes, and skills. Thus, a convenience sample of 240 nurses will be recruited to participate to account for the minimum 10 subjects per variable and any missing responses (Kellar & Kelvin, 2012). The data will be measured with a 5-point Likert scale for each subset of questions (1 Strongly disagree to 5 Strongly agree). Participation will occur both online and in-person. Content Validity: Six oncology nurses with content expertise have initially validated the SDMS-N scale. Each of the three subscales was graded using a 10-point Likert scale with higher scores representing positive measures for each category. Recruitment: Recruitment of study participants will immediately begin after obtaining the DePaul IRB approval to conduct the study. We anticipate that IRB approval will be obtained no later than the end of December 2016. Analysis: Sociodemographic data will be entered into SPSS version 19 (SPSS Inc., 2010). Descriptive statistics will be used to examine study participants\u27 characteristics. Reliability of the online survey tool will be tested using the results from SDMS-N Scale. The overall SDMS-N tool and its subscales will be deemed reliable in measuring the knowledge, attitudes, and skills of oncology nurses on SDM if the Cronbach\u27s alpha = 0.7 or higher (Devellis, 2017). Additionally, exploratory factor analysis will be performed to analyze the 23 variables in SDMS-N to see if there are identifiable groups of variables that are statistically related and make conceptual sense to group together. The exploratory analytic procedure will reduce the 23 variables of SDMS-N and test whether the groupings of variables under the subscales of knowledge, attitudes, and skills will theoretically hold together. Exploratory factor analysis is widely applied to both the development of scales and to the development of theory (Kellar & Kelvin, 2012). Results: The study will be conducted over the course of the next three to six months from January to March 2017and it is estimated that results will be completed by mid-year 2017. The goal is to better understand nurses understanding of SDM and their role in the process, as well as the barriers to their involvement, so as to better understand how to increase participation in SDM. Ideally, it will help identify actions that can be taken from an educational training perspective to achieve this goal. Final results will be reported at the STTI International Research Conference in Dublin, Ireland in July 2017

Barriers and promoters for nurses\u27 participation in cancer treatment decision making process and patient satisfaction with treatment decision

Session presented on Friday, July 24, 2015: Purpose: To examine the barriers and promoters for nurses\u27 participation during cancer treatment decision making (TDM) process and to describe the nurse and nurse practitioner\u27s (NP) perspectives on their personal beliefs, values, and attitudes relevant to their participation in cancer TDM. Study Design: Descriptive, cross-sectional study using a semi-structured interview schedule. Setting: Inpatient and outpatient oncology settings. Sample: The study sample consisted of thirty nurses and nurse practitioners who are actively involved in direct patient care (see Table 1 for further demographic description). All thirty participants have completed the interviews, but only 21 interviews have been transcribed and verified and they are included in this preliminary analysis. Complete analysis of data from all thirty participants is expected to be completed in March 2015 and full data analysis and findings will be reported in the July 2015 conference. Main Research Variables: Barriers and promoters for nursing participation in cancer TDM, nurse\u27s values, beliefs, attitudes related to participation in the decision making process. Analytic Procedure: Directed content analysis procedures were used to develop major themes from the nurse and nurse practitioner participant interviews. Initial categories and their definitions were developed based on a literature review on factors influencing cancer treatment decisions and integrative review on barriers for nursing advocacy. Transcriptions of digital audio files were completed by three trained graduate students, SPM, NYS, EM and transcription verification was conducted by the lead researcher, JDT. Interview text was read line by line by JDT and then imported to NVivo 10 (QSR international, Victoria, Australia), a qualitative data software analytic program. Initial categories and definitions were also imported to NVivo. Data coding were performed by two trained graduate students, SPM and NYS. Initial and emerging categories were reviewed and discussed again among four members of the research team, JDT, SPM, NYS and EM after coding 50% of the preliminary data. Coding comparison query was completed to check for at least 80% agreement between two coders as required by consensual validation process. Full agreement between SPM and NYS in terms of coding scheme and their definitions was reached utilizing the process of consensual validation. The overall project coding agreement was excellent at 94.3%. Ongoing in-depth discussions and agreement about the wording of final themes, factors encompassed by major themes and definitions were carried out by the entire research team. Results: The following major themes relate to the barriers for nurses and NPs\u27 participation in cancer TDM: 1. Practice barriers - non-nursing responsibilities take away time from patient; no representation of nursing in tumor boards or grand rounds; lack of uniform practice standards for nursing participation in cancer TDM; participation varies from one practice to another practice; nursing perspective is not being seek out by other health care team members; not having enough nursing input in treatment decision making. 2. Patient barriers - lack of patient\u27s emotional and mental readiness to participate in cancer TDM; patient\u27s high anxiety level due to new diagnosis of cancer makes it difficult for patient to participate in TDM process; patient simply lacks willingness to learn. 3. Institutional policy barriers - presence of institutional policy that restricts the role of nurse practitioners in relation to clinical and treatment decision making; policy requiring physician supervision instead of collaboration between physician and nurse practitioner. Existence of policy that represents misinterpretation of scope of practice for NP. Lack of institutional policy that allows specific block of time for nurses to provide patient education about therapy. 4. Professional barriers - lack of professional training and experience; when nurse practitioners are not having formal training regarding their job and lack professional experience, they are less likely to participate in cancer TDM; nursing colleagues holding nurse practitioners back from being autonomous practitioners; nurses not fully understanding the advanced role of nurse practitioners. When nurses are less valued by other health professionals and their opinions are dismissed because they are not evidence-based. 5. Scope of practice barriers - when nurse practitioners can\u27t initiate new cancer therapy due to state or federal laws prohibiting it; when scope of nursing practice for NP is not autonomous and requires physician\u27s supervision; when state or federal laws limit prescriptive authority for NP. 6. Insurance coverage as a barrier - when insurance does not cover certain therapies; when insurance does not reimburse or provide payment for nurses providing treatment education; when insurance payment for service is low, NP has to see more patients and will be forced to spend less time with patients due to high patient load. 7. Administration as a barriers - when administration does not provide adequate support staff to nurses and nurse practitioners; administration limiting the scope of practice of NPs. The following major themes relate to promoters for nurse and NP\u27s participation during cancer TDM: 1. Multidisciplinary or team approach - nurses and NPs participate more in cancer TDM when there is consistent multidisciplinary or team approach in the practice. 2. Nurses having a voice - when nurses and NPs believe they have a voice and feel that they could have an influence with the physician who ultimately makes the treatment decision, they are more likely going to participate in the decision making process. 3. Level of knowledge about the disease and its therapy - when nurses have adequate level of knowledge about the disease and its therapy, they are more likely going to have active, participatory role in decision making. 4. Nurse\u27s personal value influences participation in cancer TDM - nurses who personally value participation in cancer TDM are more actively involved in the decision making process. Conclusion: There are many barriers to the nurse and nurse practitioner\u27s participation during cancer TDM. Nurses and NPs must continue to work rigorously in removing these barriers and they must strive to attain full level of participation during cancer TDM. Barriers must be addressed regularly to improve clinical outcomes related to cancer TDM, especially patient\u27s satisfaction with treatment decision. Nursing interventions, nursing staff education and training, and policies that address these barriers must be developed in order to improve the level of participation among nurses and NPs during cancer TDM

Assessments of the Extent to which Health‐Care Providers Involve Patients in Decision Making: A Systematic Review of Studies Using the OPTION Instrument

Background: We have no clear overview of the extent to which health-care providers involve patients in the decision-making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this. Objective: To systematically review studies that used the OPTION instrument to observe the extent to which health-care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation. We conducted online literature searches in multiple databases (2001-12) and gathered further data through networking