Family Management Skills Reported by Parents of Preterm Infants in the NICU Using the Self- and Family Management Framework (SFMF).

BACKGROUND: Across the globe, family-integrated care (FICare) has become an evidence-based standard in which parents deliver the majority of infant care in the neonatal intensive care unit (NICU). Because of extensive barriers to parent presence, adaptations to FICare may be required for successful implementation. Family management theory may provide structure to the Parent Education of FICare and help nurses guide parents' skill development as equal care members. PURPOSE: To identify family management skills employed by NICU parents using the Self- and Family Management Framework (SFMF). METHODS: We conducted secondary analyses of qualitative interview data from NICU parents (n = 17) who shared their experiences of using family management skills to care for their infant. We categorized skills according to 3 main self- and family management processes: Focusing on Infant Illness Needs; Activating Resources; and Living With Infant Illness. RESULTS: Parents reported several family management skills currently identified in the SFMF, as well as new skills such as conflict management, power brokerage, and addressing resources related to social determinants of health. Parent activation of resources was critical to sustaining parent focus on the infant's illness needs. IMPLICATIONS FOR PRACTICE AND RESEARCH: By teaching skills that parents reported as helping them manage infant care, neonatal nurses may better facilitate parent integration into the care team. Future researchers can incorporate the skills identified in this study into the design of family management interventions that facilitate FICare implementation in the United States.

Linking nursing outcomes classification to the self- and family management framework.

AIM: Establish linkages between components of the Self- and Family Management Framework and outcomes of the Nursing Outcomes Classification to evaluate the comprehensiveness of outcomes addressing self- and family management in the Nursing Outcomes Classification. DESIGN: Descriptive study. METHODS: Experts conducted a six-step process to establish linkages: (1) preliminary mapping of all relevant nursing outcomes to the framework; (2) development of checklists for team members serving as 'identifiers' and 'reviewers'; (3) mapping all relevant nursing outcomes to the framework; (4) final agreement on mapped outcomes; (5) establishment of inter-rater reliability; and (6) discussion of findings with authors of the Self- and Family Management Framework. RESULTS: Three hundred and sixty-three nursing outcomes were identified as related to the management of chronic disease across all components of the framework: outcomes related to patient self-management (n = 336), family functioning (n = 16) and family caregivers (n = 11). CONCLUSION: The Nursing Outcomes Classification outcomes comprehensively address self-management, and, less so, family functioning, and caregivers. IMPLICATIONS: Established linkages can be used by nurses to track and support patient and family management outcomes across the care continuum. PATIENT OR PUBLIC CONTRIBUTION: Linking standardized nursing outcomes to the Self- and Family Management Framework can assist in goal setting and measurement of nursing care during chronic disease management. This work can help describe to funders, policy makers and others invested in health care reform the specific contributions of nurses to self- and family management of chronic disease. IMPACT: This paper demonstrates the linkages between components of the Self- and Family Management Framework and Nursing Outcomes Classification outcomes. The results of this study offer the opportunity to quantify the impact of nursing care and enhance nursing practice for patients with chronic conditions as well as contribute to developing Nursing Outcomes Classification outcomes that consider self-management processes.

A middle range theory of self- and family management of chronic illness.

BACKGROUND: The Self- and Family Management Framework was created in 2006 to help structure self- and family management science. Based on a series of reviews and syntheses of emerging research and critical evaluation, we developed the Framework into a robust nursing theory. PURPOSE: In this article, we reintroduce the Self- and Family Management Framework as the Middle Range Theory of Self- and Family Management of Chronic Illness. METHODS: We review steps in the development and updating of the Framework, share rationale for advancement to a middle range theory, explicate components of the newly designed model, and propose future directions. DISCUSSION AND CONCLUSION: It is our hope that this middle range theory will guide researchers and clinicians more comprehensively in supporting patients and families managing chronic illness, which will in turn inform continued theory development.

Use of the Self- and Family Management Framework in quantitative studies.

BACKGROUND: The Self- and Family Management Framework (SFMF) identifies factors and outcomes of patient and family management of chronic illness. In a previous citation analysis, we reported the frequency and nature of use of the SFMF. PURPOSE: We conducted a sub-analysis of quantitative articles in the citation analysis to examine testing of relationships depicted in the SFMF. METHODS: We analyzed study purposes, independent and dependent variables, study implications, and text that referred to the SFMF in 40 articles. FINDINGS: The SFMF has been used largely to explore factors affecting SFM behaviors, focusing on patient versus family self-management. Independent variables included all categories of facilitators/barriers specified in the SFMF. Dependent variables included all SFMF components (Facilitators/Barriers, Processes, Proximal and Distal Outcomes). Racial/ethnic diversity was limited among study participants. Study implications pertained mostly to psychosocial outcomes. Most studies referred to the SFMF generally. DISCUSSION: Findings will contribute to revision of the SFMF.

Improving Breast Cancer Family Caregivers' Palliative Care Literacy: A Pilot Randomized Trial.

Self- and family management (SFM) refers to patients' and family caregivers' activities to co-manage illness. Two barriers to SFM are low palliative care literacy and lack of goals of care communication, which potentially result in SFM activities that are unsupportive of patients' goals. Managing Cancer Care: A Caregiver's Guide (MCC-CG) aims to improve palliative care literacy and communication within a SFM training program. In this pilot randomized trial, we enrolled breast cancer family caregivers and collected data at 0, 1, and 3 months on palliative care literacy, SFM engagement, communication, transitions management, uncertainty, caregiver burden, and caregiver competence/personal gain. Participants (n = 35) had a mean age of 54 (range: 18-81) and were 66% white and 34% racial/ethnic minorities. Intervention participants improved their palliative care literacy and SFM engagement, reduced uncertainty and caregiver burden, increased competence/personal gain, and had more goals of care conversations over time. MCC-CG has preliminary efficacy, warranting further study.

Self-Efficacy Survey Study of Pain Self-Management in Patients with Cancer.

BACKGROUND: Cancer pain prevalence remains high, and variance in self-efficacy for managing pain may explain why some patients experience greater pain severity. AIM: This study explored perceptions of self-efficacy in relation to cancer pain severity and treatment related characteristics. METHOD: A descriptive cross-sectional survey was administered to 50 cancer outpatients. Data analysis involved descriptive and correlational statistical analyses. RESULTS: Self-efficacy to manage pain was significantly associated with time since diagnosis and ability to deal with frustration, and inversely associated with pain severity level. A large proportion of patients reported low satisfaction self-managing their pain. Most patients reported independently self-managing their cancer pain; however, satisfaction with pain management was low for a large proportion of patients. Time since cancer diagnosis and ability to deal with frustration due to cancer pain were positively associated with cancer pain self-efficacy, whereas pain self-efficacy had a significant inverse correlation with cancer pain severity. CONCLUSIONS: Enhancing self-efficacy to self-manage under-treated cancer pain is important with implications for improving pain outcomes and quality of life. Further investigation on unmet needs and preferences for cancer pain self-management support is warranted.

Demystifying the National Institutes of Health diversity supplement: Mentee and mentor experiences and recommendations.

BACKGROUND: The National Institutes of Health supports professional development of diverse researchers through diversity supplements. Limited awareness and understanding of the application process have hindered utilization of this funding mechanism. PURPOSE: We describe perspectives and recommendations of mentee and mentor recipients of diversity supplements. METHODS: Our working group, comprised of faculty from an Historically Black College and University and an R1 research university, conducted stakeholder interviews with three mentees and four mentors from various institutions. We used content analysis to derive categories of experiences and recommendations. DISCUSSION: Interviewees reported on advantages of diversity supplements, ensuring institutional support, identifying a good mentee-mentor match, developing grantsmanship specific to diversity supplements, and increasing numbers of these applications. CONCLUSION: We identify opportunities for stakeholders to increase awareness of diversity supplements. Our data support greater understanding of this mechanism, establishing strong mentoring relationships, and submitting robust applications. Findings can enhance diversity among the scientific community.

National Institutes of Health diversity supplements: Perspectives from administrative insiders.

BACKGROUND: The NIH Diversity Administrative Supplement is a funding mechanism that provides support for diverse early-stage researchers. There is limited guidance on how to apply for these awards. PURPOSE: We describe perspectives of NIH program/diversity officers and university research administrators offering recommendations for diversity supplement submission. METHODS: This article is the product of a working group exploring diversity in research. Nursing faculty from an R2 Historically Black College and University and an R1 research intensive university conducted stakeholder interviews with NIH program/diversity officers and university research administrators. We used content analysis to categorize respondents' recommendations. FINDINGS: Recommendations centered on harmonizing the applicant with the program announcement, communication with program/diversity officers, mentor/mentee relationship, scientific plan, and systematic institutional approaches to the diversity supplement. DISCUSSION: Successful strategies in submitting diversity supplements will facilitate inclusion of diverse researchers in NIH-sponsored programs. Systematic approaches are needed to support development of diverse voices to enhance the scientific community.

Pediatric Patients' and Parents' Perspectives of Unsedated Transnasal Endoscopy in Eosinophilic Esophagitis: A Qualitative Descriptive Study.

BACKGROUND: Eosinophilic esophagitis is an increasingly common inflammatory disease of the esophagus. Diagnosis and management are based on the histological presence of eosinophils in the esophageal mucosa, often requiring multiple endoscopies with sedation. Unsedated transnasal endoscopy (TNE), an alternative method of assessing the mucosa without the risks of sedation, is now being performed in the pediatric population. This is the first qualitative study on pediatric patients' and parents' experiences with TNE. OBJECTIVE: The objective of the study was to describe pediatric patients' and parents' experiences of TNE with the goal of refining TNE protocols to improve the clinical experience. METHODS: We used a qualitative descriptive approach that included in-depth, semistructured interviews with patients and parents following completion of TNE. Interviews continued until we reached thematic saturation. We analyzed data using qualitative content analysis. RESULTS: A total of 21 interviews were completed. We identified 4 themes: Appeal of TNE; Expectations and Preparation for TNE; Tolerance of TNE; and Evaluation of TNE. Perceived positive aspects of TNE were no exposure to intravenous anesthesia; helpful and clear preparation for the procedure with a demonstration video and physician phone call; distraction during TNE with virtual reality goggles and a stress ball; parent able to accompany the patient; and TNE requiring less time than an esophagogastroduodenoscopy. Negative aspects included patient stress before TNE, patient dislike of nasal spray taste and sensation, and discomfort during the TNE procedure. CONCLUSION: The overall perception of TNE among our participants was positive. Study data will allow pediatric gastroenterologists the opportunity to improve both preparation for and comfort during TNE.

Exploring Cancer Pain Self-Management Needs and Preferences: A Meta-Ethnography.

Self-management of chronic disease and related symptoms provides a framework for understanding the contextual factors that influence self-management knowledge and skills that patients and families require to manage their condition on a day-to-day basis. The management of cancer pain is a significant issue for patients and families, and their experience can provide insight on cancer pain self-management support needs and preferences. A meta-synthesis of 20 qualitative research articles on self-management of cancer pain was conducted to gain a deeper understanding of the self-management support needs of patients with cancer pain. Noblit and Hare's meta-ethnographic model was used. The meta-synthesis resulted in increased understanding of the needs and preferences for self-management support of cancer pain and the role of the health care practitioner. Practical implications are presented.

Use of the self- and family management framework and implications for further development.

BACKGROUND: The Self- and Family Management Framework (SFMF) was created in 2006 and revised in 2015 to guide research on self- and family management of chronic conditions. There has been no review of use of the SFMF. PURPOSE: We reviewed articles citing the SFMF to identify the frequency and nature of use. METHOD: We conducted a citation analysis, searching Web of Science, Scopus, and Google Scholar databases and extracted key data from identified articles. FINDINGS: Of 126 articles, 84(66%) cited the 2006 SFMF, 37(29%) cited the 2015 SFMF, and 6(5%) cited both. The SFMF was used most to inform study design. Users noted strengths (e.g., considers family context) and limitations (e.g., non-specification of patient- family caregiver synergies) of the framework. DISCUSSION: The SFMF has been used broadly to guide research on self- and family management of chronic conditions. Findings will inform development of a third version of the SFMF.

Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis.

Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers' processes to support patient self-management: "Focusing on the Patient's Illness Needs," "Activating Resources to Support Oneself as the Family Caregiver," and "Supporting a Patient Living with a Chronic, Life-Limiting Illness." Factors affecting family caregivers' support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

New Delirium Severity Indicators: Generation and Internal Validation in the Better Assessment of Illness (BASIL) Study.

BACKGROUND: Delirium is a common and preventable geriatric syndrome. Moving beyond the binary classification of delirium present/absent, delirium severity represents a potentially important outcome for evaluating preventive and treatment interventions and tracking the course of patients. Although several delirium severity assessment tools currently exist, most have been developed in the absence of advanced measurement methodology and have not been evaluated with rigorous validation studies. OBJECTIVE: We aimed to report our development of new delirium severity items and the results of item reduction and selection activities guided by psychometric analysis of data derived from a field study. METHODS: Building on our literature review of delirium instruments and expert panel process to identify domains of delirium severity, we adapted items from existing delirium severity instruments and generated new items. We then fielded these items among a sample of 352 older hospitalized patients. RESULTS: We used an expert panel process and psychometric data analysis techniques to narrow a set of 303 potential items to 17 items for use in a new delirium severity instrument. The 17-item set demonstrated good internal validity and favorable psychometric characteristics relative to comparator instruments, including the Confusion Assessment Method - Severity (CAM-S) score, the Delirium Rating Scale Revised 98, and the Memorial Delirium Assessment Scale. CONCLUSION: We more fully conceptualized delirium severity and identified characteristics of an ideal delirium severity instrument. These characteristics include an instrument that is relatively quick to administer, is easy to use by raters with minimal training, and provides a severity rating with good content validity, high internal consistency reliability, and broad domain coverage across delirium symptoms. We anticipate these characteristics to be represented in the subsequent development of our final delirium severity instrument.

Use of an expert panel to identify domains and indicators of delirium severity.

PURPOSE: Our purpose was to create a content domain framework for delirium severity to inform item development for a new instrument to measure delirium severity. METHODS: We used an established, multi-stage instrument development process during which expert panelists discussed best approaches to measure delirium severity and identified related content domains. We conducted this work as part of the Better ASsessment of ILlness (BASIL) study, a prospective, observational study aimed at developing and testing measures of delirium severity. Our interdisciplinary expert panel consisted of twelve national delirium experts and four expert members of the core research group. Over a one-month period, experts participated in two rounds of review. RESULTS: Experts recommended that the construct of delirium severity should reflect both the phenomena and the impact of delirium to create an accurate, patient-centered instrument useful to interdisciplinary clinicians and family caregivers. Final content domains were Cognitive, Level of consciousness, Inattention, Psychiatric-Behavioral, Emotional dysregulation, Psychomotor features, and Functional. Themes debated by experts included reconciling clinical geriatrics and psychiatric content, mapping symptoms to one specific domain, and accurate capture of unclear clinical presentations. CONCLUSIONS: We believe this work represents the first application of instrument development science to delirium. The identified content domains are inclusive of various, wide-ranging domains of delirium severity and are reflective of a consistent framework that relates delirium severity to potential clinical outcomes. Our content domain framework provides a foundation for development of delirium severity instruments that can help improve care and quality of life for patients with delirium.

Four Approaches for Determining Composite Scores for the Measurement of Transition in Cancer Scale.

BACKGROUND: We created the Measurement of Transitions in Cancer Scale to assess patients' perceptions of the extent of change they experience with cancer-related transitions and how well they feel they are managing these transitions. For some transitions, we found that the more change that was reported, the worse management was reported; however, the benchmark by which patients assess how well they have managed may vary with the extent of change. OBJECTIVES: The aim of the study was to identify approaches to combine reports of extent and management of change. METHODS: Among women with breast cancer, we explored relationships of composite measures (arithmetic and geometric means, subtractive and proportional need for improvement) with other indicators of well-being (symptoms, anxiety, depression, uncertainty, self-efficacy, knowledge of care options, medical communication competence). We examined statistical significance using false rate discovery for multiple tests on correlations with clinical outcomes. RESULTS: Greater extent and less management were significantly associated with higher total symptoms, anxiety, depression, uncertainty, and less self-efficacy in Personal Transitions, but not in Care Transitions. The arithmetic and geometric means had weak correlations with clinical outcomes, whereas the subtractive and proportional need for improvement had significant correlations with most clinical outcomes both in Personal and Care Transitions. The combined proportional need for improvement in Personal Transitions was significantly associated with total symptoms, anxiety, depression, uncertainty, and self-efficacy. The Care Transitions score was also significantly associated with total symptoms, anxiety, uncertainty, and self-efficacy. DISCUSSION: These approaches can be applied to other aspects of self-management that require assessment of the extent and management of an experience. The four approaches yield different results. We recommend the need for improvement composites to capture correlations with the clinical outcomes.

Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias.

Unexpected cognitive lucidity and communication in patients with severe dementias, especially around the time of death, have been observed and reported anecdotally. Here, we review what is known about this phenomenon, related phenomena that provide insight into potential mechanisms, ethical implications, and methodologic considerations for systematic investigation. We conclude that paradoxical lucidity, if systematically confirmed, challenges current assumptions and highlights the possibility of network-level return of cognitive function in cases of severe dementias, which can provide insight into both underlying neurobiology and future therapeutic possibilities.

Patients' and oncologists' views on family involvement in goals of care conversations.

OBJECTIVE: Family members can significantly impact advanced cancer patients' treatment and are important participants in goals of care (GoC) conversations. Yet, research on patient and physician perspectives about family involvement and influence on GoC conversations is limited. Our purpose was to describe patients' and oncologists' perspectives about family involvement and influence on GoC conversations among patients with advanced cancer. METHODS: We conducted semi-structured interviews at academic, community, and municipal hospitals (n = 4) with patients with advanced cancer (n = 39) and their oncologists (n = 21). Interviews were audiotaped and transcribed. We analyzed data using interpretive description. Three coders independently coded transcripts, compared codes, and resolved discrepancies. RESULTS: We identified 4 themes common to patients and oncologists regarding family involvement in GoC conversations: (1) Presence and Duration of Family Involvement; (2) Family Expectations; (3) Protecting patients'/Family Members' Feelings; and (4) Patient-Family Disagreement. For patients, we identified 2 additional themes: (1) Family and Oncologist Relationship and (2) Effects of Cancer on Family. Both patients and oncologists emphasized the importance of family support for the patient's understanding of their illness and on patients' emotions. We also identified ways in which family involvement may benefit or prove challenging to GoC conversations. CONCLUSIONS: Patients and oncologists have similar views about family involvement in GoC conversations. Learning how to communicate with family members should be a critical component of physician education in palliative care.

Self-management: Enabling and empowering patients living with cancer as a chronic illness.

With recent improvements in the early detection, diagnosis, and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this article, self-management interventions that enable patients and families to participate in managing their care along this continuum are reviewed. Randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer care continuum are reviewed, and the Chronic Care Model is presented as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. It is concluded that the need for a common language with which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually agreed upon care plans that enable and empower patients to care for themselves in the way they prefer.

Facilitators and Barriers to Oncologists' Conduct of Goals of Care Conversations.

INTRODUCTION: Goals of care (GoC) conversations optimally begin early in the course of cancer care, yet most happen near the end of life. We sought to describe oncologist-reported facilitators of and barriers to GoC conversations with patients who have advanced cancer. METHODS AND MATERIALS: We conducted individual, semistructured qualitative interviews with oncologists from 4 academic, community, municipal, and rural hospitals in New York and Connecticut. Interview topics included approach to GoC conversations, facilitators, barriers, and organizational influences. We analyzed data using interpretive description. We collected demographic and practice information and surveyed oncologists on their communication skills training. We calculated descriptive statistics for quantitative data. RESULTS: Oncologists (n = 21) had a mean age of 46 years (range: 34-68), 67% were male, 71% were White, 24% were Asian, 10% were Hispanic, and 5% were Black. They reported an average of 20 years in practice (range: 8-42), and 62% had received training on having GoC conversations. Facilitators included patient's poor functional status, patient's high health literacy, family understanding and acceptance, oncologist's practice experience, and a supportive practice environment. Barriers included certain patient demographic and clinical characteristics, patient religion and culture, patient's denial, and lack of time. CONCLUSION: GoC conversations may be facilitated by enabling oncologists to conduct these conversations despite difficult circumstances and emotional reactions by activating patients and family via increased health literacy and by advancing palliative-informed practice environments.

How skilled do Israeli nurses perceive themselves to be in providing palliative care? Results of a national survey.

BACKGROUND: In Israel, palliative care (PC) services are limited. This study assessed Israeli nurses' perceived competencies and educational needs in providing PC. DESIGN: Online administration of the End-of-Life Professional Caregiver Survey (EPCS). SETTING/SUBJECTS: Oncology and PC nurses were identified through the Israel Ministry of Health and Oncology Nurses' Society. MEASUREMENTS: Demographic and practice data were analysed using analysis of variance tests to determine differences between nurse characteristics by EPCS domains. RESULTS: The sample (n=105) was 94% female, had a mean age of 48 years (SD=10.5) and 83% were Jewish Israeli. Thirty-nine percent reported PC training in nursing school and 42% felt their workplace provided little to no PC education and resources to nurses. Those with advanced degrees and those who received post-graduate PC training had higher mean scores across EPCS domains (p<0.05 for all). CONCLUSIONS: Nursing education and workplace support in PC for Israeli nurses are limited. It is hoped that these findings may inform future PC nursing education and policy in Israel.