Ethics, health disparities, and discourses in oncology nursing's research: If we know the problems, why are we asking the wrong questions?

AIMS AND OBJECTIVES: To disrupt conflations between 'health disparities research' and critical engagement with racism, whiteness, other oppressions and our profession's ongoing roles in white supremacy. BACKGROUND: In Oncology Nursing Society's (ONS) 2019-2023 research agenda, health disparities are highlighted as a top priority for nursing knowledge generation and intervention. The document concludes needs for increased 'minority and vulnerable population' participation in cancer clinical trials, reduced financial toxicity, behavioural interventions for risk reduction, incorporation of social determinants of health and technology to promote rural access to high-quality care. DESIGN: In this critical resistive, theoretical and ethical analysis on current discourses on health disparities research in oncology nursing, we ask: (a) What forces (stated and unstated) shape current oncology nursing discourses about health disparities?; (b) What assumptions about health and power are embedded in these discourses?; (c) Are we, as nurses and scientists, asking the right questions? METHODS: Line-by-line analysis of the ONS Research Agenda for 2019-2023 'Health Disparities' section. RESULTS: The health disparities described in this report are not new to the literature, nor are many of the proposed solutions. As noted, disparities such as disproportionate cancer-related morbidity and mortality across identities (gender, race and sexual orientation) have not improved and some have worsened over several decades. CONCLUSIONS: That discourses on prioritising cancer-related health disparities persist while disparity-related outcomes remain largely unchanged presents challenges-both moral and pragmatic. We must ask, 'Rather than the concept of "health disparities," as presently understood in cancer nursing, what is the better approach to examine health equity and ethical nursing research practices?' RELEVANCE TO CLINICAL PRACTICE: This paper offers several starting places for nurses, especially with the following questions: 'Who does this harm?' Answer then revise: 'Who might this harm now?' Answer then revise: 'Are these harms worth the activity?' And repeat this process.

Transcultural Nurses' Caring for Pilgrims for the First Time During Hajj Season in Saudi Arabia.

The Kingdom of Saudi Arabia invests tremendous governmental resources to support the annual Hajj season, including providing free world-class healthcare for all visiting pilgrims. Nurses from around the Kingdom are encouraged to work at Makkah during this period. These nurses come from different cultural backgrounds and provide care for pilgrims from around the world. The study utlized descriptive phenomenology design. A total of 11 transcultural nurses were interviewed. A thematic analysis was performed to understand the lived experience of the transcultural nurses participating in the Hajj for the first time. Five themes emerged. These included serving with satisfaction; a supportive and fair system; professional and personal values; difference, and difficulties and problems. This is the first study of transcultural nurses' experiences of providing nursing care to pilgrims during the Hajj. The results highlight transcultural nurses' perceptions of the benefits and challenges of providing care during the Hajj and potential strategies to improve preparation and care quality.

Use of theory to guide development and application of sensor technologies in Nursing.

Sensor technologies for health care, research, and consumers have expanded and evolved rapidly. Many technologies developed in commercial or engineering spaces, lack theoretical grounding and scientific evidence to support their need, safety, and efficacy. Theory is a mechanism for synthesizing and guiding knowledge generation for the discipline of nursing, including the design, implementation, and evaluation of sensors and related technologies such as artificial intelligence and machine learning. In this paper, three nurse scientists summarize their presentations at the Council for the Advancement of Nursing Science 2019 Advanced Methods Conference on Expanding Science of Sensor Technology in Research discussing the theoretical underpinnings of sensor technologies development and use in nursing research and practice. Multiple theories with diverse epistemological roots guide decision-making about whether or not to apply sensors to a given use; development of, components of, and mechanisms by which sensor technologies are expected to work; and possible outcomes.

Cancer Pain Social Processes and Pain Management in Home Hospice Care.

BACKGROUND: The high incidence of pain associated with end-stage cancers indicates the need for a new approach to understanding how and why patients, caregivers, and clinicians make pain management choices. AIMS: To provide pilot data and preliminary categories for developing a middle-range nursing theory and framework through which to scrutinize and identify problematic processes involved in management of poorly controlled pain for home hospice patients, caregivers, and nurses, the "caring triad." DESIGN: A qualitative pilot study using constructivist grounded theory methodology to answer the question, "In the context of hospice, what are the social processes occurring for and between each member of the hospice caring triad and how can these processes be categorized?" SETTINGS: Home hospice care. PARTICIPANTS/SUBJECTS: Hospice patients experiencing cancer pain, family caregivers, hospice nurses. METHODS: From a sample of triads including hospice patients, caregivers and nurses, data were collected at observational visits, individual interviews, and a focus group over the course of each triad's study involvement. We used recursive coding processes to interpret data. RESULTS: Three preliminary categories of social processes were identified: Pain Meaning, Working Toward Comfort, and Bridging Pain; and six subcategories: perceiving pain and discomfort, knowing what to do, planning activities, negotiating a pain plan, talking about pain, and being together in pain. CONCLUSIONS: As illustrated in the caring triad cases presented, this study moved the management approach of pain from a dichotomous realm of nurse-patient, to the more naturalistic realm for home hospice of nurse-patient-caregiver. In analyzing social processes within and across triad members, we identified categories of impact to target assessment, intervention, and education to improve pain outcomes.

The Role of Hope for Adolescents with a Chronic Illness: An Integrative Review.

UNLABELLED: Hope is a human strength essential for adolescents' enduring and coping with chronic illness however, the role of hope is not well understood in this population. OBJECTIVES: This integrative review describes what is currently known about the role of hope in adolescents with a chronic illness. METHOD: A methodological review using an integrative approach by R. Whittemore and K. Knafl (2005) was performed. DATABASES: MEDLINE via Pubmed; CINAHL; PyscINFO and Google scholar were searched for articles published in peer-reviewed journals from 1995 to 2015, using search terms 'hope and chronic illness' with age limiters for all except Google scholar (title search of "hope and adolescents"). RESULTS: Of the 197 studies initially retrieved: a total of 27 quantitative studies, 8 qualitative studies and 19 theoretical works were selected for review. Seven themes emerged including that hope: (i) promotes health (ii) facilitates coping and adjustment, (iii) enhances quality of life, (iv) is essential in purpose in life and illness (v) improves self-esteem, (vi) is an important factor in resilience and (vii) affects maturation. Persons reporting higher levels of hope find multiple routes to goals, view setbacks as challenges, and better manage psychological symptoms. DISCUSSION: Although theory and a limited body of empirical research to date suggest a link between hopeful thinking and physical health, the specific mechanisms remain unclear. As hope is linked to resilience, further research should explore whether adolescents with higher hope return to baseline faster than their lower hope counterparts.

Older adults' favorite activities are resoundingly active: findings from the NHATS study.

Activity is associated with health among older adults yet older adults' favorite activities have rarely been investigated. We analyzed the community dwelling, cognitively-intact sample of NHATS, a nationally representative sample of adults ≥ 65, who had named their favorite activities (N = 5247). Logistic regression models estimated the odds of choosing a physical activity controlling for demographics, self-rated health, and disability. For all ages, four of the top five most common favorite activities were active: walking/jogging (14%), outdoor maintenance (13%), playing sports (8.9%), and other physical activity (8.7%). These findings sustain in 65-75 year olds. Even in 80-84 year olds, 3 of the top five activities are active. These findings vary by self-rated health (OR = 0.71, p < 0.001), disability (OR = 0.72, p < 0.001) and gender (OR = 0.52, p < 0.001). Policy makers, clinicians, and urban planners can use these results in their work.

Physical Activity in Young Adult Cancer Survivors: A Scoping Review.

PROBLEM IDENTIFICATION: Physical activity, a precision health strategy, positively affects biopsychosocial health in adult cancer survivors. However, understanding its effects among young adult (YA) cancer survivors is limited. The purpose of this scoping review was to explore existing research on physical activity in YA cancer survivors. LITERATURE SEARCH: CINAHL®, PubMed®, PsycINFO®, SPORTDiscus, Web of Science, and Cochrane Library were searched, producing 63 articles and 28 grey materials. DATA EVALUATION: Data extraction, guided by the revised symptom management model, included research aims, sample, design, primary outcome measures, and effects of physical activity. SYNTHESIS: Findings of 35 review articles were reported under three main categories. IMPLICATIONS FOR RESEARCH: Lack of clinical guidelines and limited research specific to YA cancer survivors hinders physical activity's use as a symptom management strategy. Research is needed that addresses the development and clinical implementation of physical activity guidelines.

Climate Change Should Be on Every Nursing Research Agenda.

Human-caused climate change is a global emergency, and its harms are predicted to increase exponentially in the coming years, particularly if unsustainable practices continue unmitigated. Adverse effects of climate change on communities affected by or at risk for cancer, such as frail older adults, are already measurable and deadly. If nurse scientists continue to ignore these realities, more people are likely to suffer and die as a result. The purpose of this critical reflection is to discuss the vital necessity of including climate change in the research agenda of the Oncology Nursing Society and all nursing science. Using an approach grounded in critical theory and design justice, the authors provide specific suggestions for the incorporation of scientific considerations and nursing measures related to climate change into oncology nursing science.

Catalyzing Research to Optimize Cancer Survivors' Participation in Work and Life Roles.

Participation refers to a state of health in which a person is able to fully engage in roles and life situations. Adults living with and beyond cancer often report persistent participation restrictions that affect their productivity and quality of life. The American Occupational Therapy Foundation convened a group of scientists from seven different disciplines in a Planning Grant Collective (PGC) to stimulate research to identify scalable ways to preserve and optimize participation among cancer survivors. Participants identified challenges, prioritized solutions, and generated novel research questions that move beyond symptom and impairment mitigation as outcomes to identify interventions that improve participation in roles and life situations. This article summarizes the PGC discussion and recommendations regarding three challenges: (a) the dynamic and multi-faceted nature of participation, (b) a need to integrate the concept of participation within the culture of oncology, and (c) identification of priority areas in which new lines of research regarding participation would be most impactful.

Recruiting and Retaining Patient-Caregiver-Nurse Triads for Qualitative Hospice Cancer Pain Research.

BACKGROUND: Qualitative pain research for hospice patients with cancer and their caregivers involves recruiting and retaining participants with multiple vulnerabilities and ethical and logistical challenges. These have been reported for studies of individuals or dyads. However, there are no reports of the related challenges and outcomes where the sampled population was a hospice triad. OBJECTIVES: Qualitative research about pain management for home hospice patients with cancer contributes rich descriptive data and such studies are critical to improving cancer pain outcomes. We describe the ethical and pragmatic challenges we faced in a study of the hospice caring triad, operationalized as the patient, family caregiver, and nurse; how our study design anticipated them; and related outcomes. RESULTS: We found that having an established relationship with the hospice agency at which we recruited participants, clearly identifying potential participants at the onset of hospice care, practice using a recruitment script, patient recruitment of caregivers, establishing rapport, and participants determining when interviews should end helped us recruit and retain our sample. We were unable to accrue our anticipated triad sample, partially because of nurse gatekeeping and the condition at admission of patient participants who enrolled but had physical decline or died prior to written consent. CONCLUSIONS: Although researchers will always face challenges to enrolling individuals and groups in cancer pain studies, with careful study design, recruitment, and retention planning and research team-participant engagement, it is possible to gather a robust corpus of qualitative data.

Pain and social processes for hospice cancer patients: An integrative review.

PURPOSE: Hospice cancer patients experience poorly-controlled pain in spite of widely-disseminated evidence-based guidelines for use by hospice care practitioners. Pain management occurs in the context of the interdisciplinary team, centered on a caring triad in the home: the person with pain, their caregiver, and their nurse. This review: 1) Summarizes what is known about differing ways that members of the hospice caring triad (patients, caregivers, and nurses) interpret and respond to cancer pain, in order to develop a cancer pain social processes theoretical framework, 2) Identifies gaps in understanding of hospice cancer pain social processes, and 3) Identifies framework concepts for research-based clinical practice with potential to improve pain outcomes. METHODS: Our integrative review of the literature resulted in the identification and synthesis of 21 unique studies of cancer pain social processes, which were categorized according to a social processes framework and hospice caring triad member roles, using a social processes concepts matrix. RESULTS: Pain meanings, goals, and related responses vary for persons with pain, caregivers, and nurses. Studies have explored individual social processes concepts or triad member roles. Studies identify the need for pain meaning to be included in hospice pain management plans. CONCLUSIONS: To our knowledge, no single study has generated a framework for hospice cancer pain social processes addressing and incorporating the roles of all three caring triad members. Therefore, comprehensive hospice cancer pain clinical evaluation and interventions plans may be missing key elements of pain management, especially for persons with ongoing poorly controlled pain.

Advantages and Limitations of Wearable Activity Trackers: Considerations for Patients and Clinicians.

BACKGROUND: Exercise, light physical activity, and decreased sedentary time all have been associated with health benefits following cancer diagnoses. Commercially available wearable activity trackers may help patients monitor and self-manage their behaviors to achieve these benefits. OBJECTIVES: This article highlights some advantages and limitations clinicians should be aware of when discussing the use of activity trackers with cancer survivors. METHODS: Limited research has assessed the accuracy of commercially available activity trackers compared to research-grade devices. Because most devices use confidential, proprietary algorithms to convert accelerometry data to meaningful output like total steps, assessing whether these algorithms account for differences in gait abnormalities, functional limitations, and different body morphologies can be difficult. Quantification of sedentary behaviors and light physical activities present additional challenges. FINDINGS: The global market for activity trackers is growing, which presents clinicians with a tremendous opportunity to incorporate these devices into clinical practice as tools to promote activity. This article highlights important considerations about tracker accuracy and usage by cancer survivors.

Development of an Exergame for Urban-dwelling Older Adults With Functional Limitations: Results and Lessons Learned.

BACKGROUND: Falls at home are common and potentially fatal for disabled older adults. To address this problem, we created an academic-community partnership involving disabled, urban-dwelling older adults and their families, the housing authority, a Tai Chi master, and a university. OBJECTIVES: We conducted a pilot to assess safety, acceptability, and feasibility of a Wii-based exergame designed to increase disabled older adults' strength and balance. METHODS: A working prototype was developed and evaluated. Then, we piloted a refined version with 19 disabled urban-dwelling older adults. RESULTS: The program was enjoyable, feasible, and acceptable. Participants described multiple functional improvements. Of the 16 who completed at least three gaming sessions, average balance score increased 25% and gait speed increased 19%. CONCLUSIONS: This pilot showed promising results for improving strength and balance in the home setting, and yielded valuable lessons about health technology development with community partners.